Twenty-six patients with Gilbert's disease (congenital, non-haemolytic unconjugated hyperbilirubinaemia) were analysed regarding their clinical presentation, age at onset of symptoms, sex, frequency of symptoms, family history, race and religion. Seventy-three per cent were men, the mean age at onset of symptoms was 21 years, and frequency of symptoms ranged from 4 times a year to once every 5 years. The symptoms, which were extremely vague, included the following: recurrent asymptomatic jaundice in 74%, malaise in 66%, asthenia in 65%, and vague abdominal distension in 52% of patients. Eight per cent of patients were totally asymptomatic.

Note: asthenia is weakness

Key Liver Functions

Take a look at the key liver functions. There may be an overall slowing of liver function in Gilbert's Syndrome, though at this time the only evidence is via connections to the symptoms people are experiencing.

Key Liver Functions
The liver is the body’s largest organ, weighing three to five pounds in adults. Optimal nutrition is a function not just of what we eat and digest, but of how well the liver transforms incoming nutrients into the proper biochemical forms your cells need to perform their metabolic functions. Some of the liver’s key functions:

• Converts the thyroid hormone thyroxine (T4) into it more active form triiodothyronine (T3). Inadequate conversion may lead to hypothyroidism, chronic fatigue, weight gain, poor memory and other debilitating conditions.
• Creates GTF (Glucose Tolerance Factor) from chromium, niacin and possibly glutathione. GTF is needed for the hormone insulin to properly regulate blood-sugar levels. Manufactures bile salts which emulsify fats and the fat-soluble vitamins A, D, E, and K for proper absorption. The liver also removes some fat-soluble toxins from the body.
• Activates B vitamins into their biologically active coenzyme forms. Virtually every nutrient must be biotransformed by the liver into its proper biochemical form before the nutrient can be stored, transported or used in cellular metabolism.
• Stores various nutrients, especially A, D, B-12 and iron for release as needed.
• Manufactures carnitine from lysine and other nutrients. Carnitine is the only known bionutrient which can escort fats into the mitochondria where they are used to generate ATP energy. The mitochondria generate 90% of the ATP energy at the cellular level.
• Converts lactic acid from a toxic waste to an important storage fuel. Lactic acid is produced when glucose is metabolized through the energy production cycle. When excessive levels accumulate, you experience sore muscles. A healthy liver will extract lactic acid from the bloodstream and convert it into the reserve endurance fuel, glycogen.
• Serves as the main glucose buffer, preventing high or low extremes of blood sugar. The liver is the key regulator of blood sugar between meals due to its manufacture, storage, and release of glycogen, the starch form of glucose. When blood sugar is low, a healthy liver converts stored glycogen into glucose, releasing it into the bloodstream to raise blood sugar levels. When blood sugar is high, a healthy liver will convert the excess into stored glycogen or fat.
• Chief regulator of protein metabolism. The liver converts different amino acids into each other as needed.
• Produces cholesterol and converts it into the various forms needed for blood transport.
• Converts essential fatty acids such as GLA, EPA, and DHA into the lipoprotein forms necessary to allow transport via the bloodstream to the 50 trillion cells requiring fatty acids.
• Main poison-detoxifying organ in the body. The liver must break down every substance toxic to the body including metabolic wastes, insecticide and pesticide residues, drugs, alcohol, etc. Failure of this function will usually cause death in 12 to 24 hours.
• Removes ammonia, a toxic by-product of animal protein metabolism, from the body.
• Breaks down hormones after they have served their function. i.e., if the liver does not break down insulin fast enough, hypoglycemia results because the circulating insulin continues to lower blood sugar.

Note: The explanatory power of a sluggish overall liver is quite strong. This has the ability to explain fatigue, tiredness, hypoglycemia, reactive hypoglycemia, muscle soreness, and possibly the mental effects due to slower detoxification - brain fog, poor memory, difficulty concentrating, difficulty finding the right words. Plus the hypothyroid effects of low T3 levels can cause many of the related problems.

Gilbert's Syndrome Symptoms

Following are the symptoms described by 286 people with Gilbert's Syndrome. You will see common themes running through them all; things which appear so frequently as to indicate a direct relation to GS. There are also some symptoms which show up rarely, which are probably unrelated to GIlbert's Syndrome.

You can also see the results from The Survey. As more people fill out the survey, this will provide even stronger evidence as to what can be attributed to Gilbert's Syndrome (as well as to what degree) and what is common across the population. You can help by filling out the survey.

Note that these were not all exhaustive lists of symptoms. Some people were replying to a topic about a specific symptom. Jaundice is turning yellow. The whites of people's eyes will turn yellow before their skin does. loss of appetite refers only to lack of appetite. loss of appetite nervosa is the psychological problem with eating. IBS stands for Irritable Bowel Syndrome, which is a catch-all diagnosis for people with digestive problems when nothing shows up on tests. CFS stands for Chronic Fatigue Syndrome, and is also known as ME. It's a catch-all diagnoses for people suffering severe fatigue and energy problems when nothing shows up on tests.

Note: This is the probable cause behind diagnoses of IBS, which is a catch-all for digestive problems without a known cause. Being that GS is commonly thought by doctors to be asymptomatic, the diagnosis of IBS will often be given when gastroparesis is the actual problem. Bolstering this fact is that remedies for acid reflux dont work and often make the situation worse, while remedies for gastroparesis have markedly positive effects.

Following are the symptoms posted by people with Gilbert's Syndrome on the Gilberts Web Forums. In each case I have presented the symptoms reported in list form, followed by relevant quotes that provide more details. Note that in many cases these arent full lists of symptoms; they include posts on a specific topic and summaries of the most disruptive symptoms.

Cycles: The symptoms generally go in 2-3 week cycles, though there are longer periods of feeling better or wose. Lately I've been in a longer period of feeling worse.

I have night sweats from time to time. Sometimes I wake up soaking, other times just certain parts of me are affected. The last time I awoke from night sweats (a few days ago), I took my temperature. It was 97.1, which is lower than it should be. Yet this is not an abnormally low body temperature for me - mine have always been about a degree lower than they should be. In the summer the ambient heat brings up my temperature a little, lately into the 98s. But if it's at all cool out, I'm in the 97s or high 96s. I've had sinus problems for a long time, and seen sinusitis listed as something GS people are suffering. Do many of you have sinus problems? What about allergies? Currently my sinus symptoms are strange - sinus pain and rawness, without the least bit of stuffiness. I can breathe clearly, but the pain, and the sinus headaches!

1977
Male, age 25
Symptoms: tiredness, jaundiced eyes

I have just been diagnosed with GS. I went to the doctors due to a very prolonged tiredness, it's been about 6 months now! All through my life I had been very tired when stressful events were going on around me. The worst was when I was at college, I would sleep all the time. The yellowing eyes I put down to being a bit tired. The problems I had when playing football I put down to being unfit.

I have gotten so used to ignoring my body's symptoms, I am not really sure what happens when I eat the "wrong" stuff. I occasionally get nauseous and kind of heartburny, but I usually ignore it. I went on this Liver Cleansing Diet mainly because it seemed to make sense. I mean, if my liver is not functioning at 100% because of the GS, then symptoms or not, wouldn't it be wise to do what I can to help it. Also, I have a tendency to be constipated, is that the GS too?
I have had symptoms of GS for years; fatigue, dizziness, foggy brain, etc... I have dizzy spells rather frequently. I am newly diagnosed, but I have always noticed that the dizzy spells corresponded with not eating soon enough.

I get itchy on my arms and legs only, but it feels like the itch is coming from inside, and very sharp - like needles.

ajay
Symptoms: sensitivity to diesel

Put me near any boat diesel...the smell will cause me to turn purple, sweat and locks my body up. I swear...my eyelids turn purple, not blue or red; purple! I can go on any boat, but a diesel so I don't think it's sea sickness.

I am always tired, not very hungry - and as a result skinny (it takes some good sensi to get me eating a lot!), VERY drowsy/exhausted after a lot of exercise, YELLOW - ALL THE TIME! especially when sick - or just WHITE like a sheet, generally grumpy/pissed off (I can admit that - now I understand), chemical intolerance (harsh reactions to food poisining - almost died a year ago from oysters)… I JUST FEEL SICK, ALL THE TIME, like there's always some kind of virus in me.

3/28/05 - Right now I am looking at the veins on my hands and arms...they are thick and standing up under my skin. My head is really heavy, my thinking foggy. My arms and legs feel fatigued, heavy and yet numbing at the same time. And I want to lay down and sleep, but I can't.

7/15/5 - I'm still lethargic and slow today, but feeling more mobile. Yesterday, though, I was freezing cold for about three hours, and it was 75F here. I bundled up in thick blankets and my teeth still chattered. Then I slept, sortof, for about five hours, woke up feeling like a truck had run over me. My arms and legs still ache (muscles), and I have the edge of a headache.. I get the "no appetite" too, for about three days in a row. "Brain fog" is a great way to describe it. It's kinda transient too...comes and goes. Do you feel "scattered" sometimes too, like you can only handle one thought at a time or its gone!? Along the same lines, does this cause you to feel frustrated and irritated alot?

I am nearly always lethargic and go into a trance like state on occassions (I actually like this as it leaves me feeling rested after) but friends find it hard as I have not got the energy to answer their questions and when im like this I tend to answer at least 5 mins later much to their annoyance, I lose my words regularirly and just lose energy quickly... I struggle to lose any weight when dieting and sticking rigidly to it... I ache all over and feel sick... I have also suffered with my glandular system, having had Tonsilitis, glandular fever, Quinzies, my glands are always coming up for even a mouth ulcer.

I was diagnosed with GS over 2 years ago. The fatigue, brain fog and the muscle aches come and go but recently others including a constant sore throat, odd metallic taste in the mouth, indigestion and chest pain have recently been diagnosed, following an endoscope, as Acid Reflux... Since the Acid Reflux diagnosis, I found that limiting my intake of acid inducing foods together with a PPI medication like Lansoprazole practically 'cures' the sore throat and indigestion and the related chest pain. My memory is also bad at times. I get what I call 'word drop out'! You know, when you just can't remember THAT word, THAT name, THAT place ... Also have difficulty concentrating - even hard sometimes to read something like a recipe correctly! I definately need lots of sleep to keep the fatigue at bay and interestingly prior to what I call a GS 'attack' when every symptom comes to call, I do have sleepless nights including waking in a panic, feeling like I have just had an electric shock or felt/heard a big explosion. I experience something similar on and off - you described it as 'seeming like the floor is moving up and down and back and forth' - I agree, I remember staring at the railway platform once and everything seemed spongy and moved as you described. It definately seems to be linked with one of my GS phases and I now try to eat regularly and keep hydrated. During the last week I have felt incredibly tired, had heart palpitations, chronic indigestion, pain under bottom right ribs and general anxiety which I suppose is only natural! All these feelings I have usually associated with GS - they come and go. I have had the same tingling feelings, sometimes all over but mostly in my legs for about a year now. It comes and goes, sometimes worse, sometimes better. When it's bad I also get a tingling feeling in my mouth and a metallic taste. My symptoms all started about 1994, 8 years ago. I had quite a busy lifestyle, lots of travelling around for work but not excessively so. Symptoms started as extreme tiredness, headaches, word drop out(!) you know what I mean, feeling sick, fast beating heart... I have had a few reoccurrences

andiuk1975
Symptoms: weight gain, muscle twitches, hypothyroidism

Normally with GS they say people lose weight but despite increasing exercise and watching what I eat I can't seem to lose a pound (am about 2 stone overweight) and also get the muscles twitches pretty bad. My doctor said my thyroid is slightly underactive.

I used to get a cold every few months and would have to have a sleep in the afternoon after work most days just to be able to interact normally. I have been diagnosed with Gilbert’s for about 2 years and at the age of 42 that was a bit of a shock. After the initial diagnoses and spending some time looking around this site and others like it I have discovered that my life’s history of fatigue, sickness, low libido and general ill health was reflected in your stories and messages

I've also been feeling more tired lately. I've also developped a nasty shake, mainly in my left hand but I get it all over from time to time. I rarely eat meals, skip some completely even. I have up and down days. I feel OK today, but tomorow I could be right back down again. I have worse mood swings than a pregnant woman so I really feel sorry for the lady in my life. She's great and doesn't deserve me snapping at her all the time. I don't think its a primary symptom of Gilberts, but more a kind of secondary if you like. I get depressed because I'm always so tired and just don't have the energy.

Anujbahl
Symptoms: tiredness, nausea, headaches

Apart from feeling tired and nausea, I am encountering headache, this one is quite persistent, it goes ON and ON for 3 - 4 days and happens quite frequently.

Apoplexic
Symptoms: brain fog, headaches

I suffer from "brain fog" regularly too. In fact, I'm pretty spaced out today which is very dissapointing because I've been concentrating on my diet for weeks, eliminating dairy, refined sugars, etc, and yesterday (Sunday, 27th Nov '05) I felt great and fully alert for the first time in ages. I went to bed a bit later than usual lastnight (11pm), blame Harry Potter for that, and now today I'm fogged out. It's 2:10pm and I still have an ache in my forehead and "pressure" behind my eyes and can't seem to focus on anything. I'm currently working a big database project and this is really impacting my ability to concentrate properly

Sometimes I feel so tired it is hard for me to function, even if I am inactive. I also suffer from allergies and I used to think I had food allergies, because after eating fatty foods, chocolates, etc. I felt nauseated and so full I felt like never eating again. Other foods gave me headaches and I had to eat very little until the feeling subsided. But my allergies test did not react to foods… Some of the symtoms I've experienced are: tiredness, bloating, upset stomach, intolerance to alcohol, paleness, dizziness, irritability, weight loss that I find hard recuperate, cravings for sugar and chocolate, etc. Finally I was diagnosed with GS last year. At the moment I´m also taking a medication that brings nausea, otherwise, I only feel nausea when my diet is too fatty or if I eat too much chocolate, which I love.

ashley
Symptoms: nausea, dizziness, irritability

I was just diagnosed this month after suffering with nausea for 1 1/2 years. i also find myself dizzy on occation (i always dismissed it. tired, hungry etc.) and find myself very irritable and short tempered.

I had the lump in throat, and the pain, especially after I drank milk. If I didn't drink milk at all the lump and pain eased. A subsequent CT of my throat proved that I actually had an enlarged thyroid. I went milk/lactose free for the next 4 years and the problem never returned. When I started the SCD diet I found that I could once again tolerate milk products but without the thyroid problem... It may be wise to first rule out Sjogren’s syndrome. Both I and another sibling share the Sjogren’s symptoms but my sister's are far worse than mine. All of my dry 'everything' symptoms, and the mouth ulcers immediately vanished when I started a form of the 'SCD' diet.

I also get palps, breathlessness and anxiety attacks but the main symptm for me is fatigue. I also suffer far, far worse when I drink than my friends. People (especially my wife) have often commented that they could 'smell the drink' on my body after a heavy night. I wonder if my body (liver) is trying to dispose of the alcohol through some other method in desperation to get rid of it.

For the past 3 yrs it seems to be worse. Generally I would be down, tired, nauseated,not hungry for just a few days, but lately I keeps me down for almost a month straight. Before I wasn't so "yellow" but now I'm a walking banana. I go for days on end with no food, I sleep 10 hrs a day. I have no energy, no enthusiasum, nothing.

billmc
Age 31
Symptoms: jaundiced eyes, fatigue, brain fog, sweating

My own experience with gs started a couple of years back when i was 29. i fell ill with glandular fever for 4 months. my sister noted the whites of my eyes were yellow and during the testing for glandular fever,they found i had gilberts which had been triggered by gf. however over the last year,even though the gf has gone,i have had fatigue,"fuzzy" head, sweats etc.

Blackcurls
Symptoms: tiredness, sweating, nausea, panic attacks

I am feeling very strained lately, I have sweats and vomiting like feeling - like food poisoning. I also have panic attacks and am under stress.

I am 25. I've been plagued with headaches, dizzy spells, fatigue (8 hours of sleep and i still feel i could use a little more), and episodes of just feeling "blah". I can have days where my stomach is cramped before I finish eating… I also tend to be depressed a lot and cranky quickly

im a 24 yr old male who has suffered with many of the symptoms people list here since the age of 13
Symptoms experienced: floaty stool (not sure if this is related), tips of fingers change colour regulary (white/yellow/purple), weight loss (due to not feeling hungry and feeling nautious), breathlessness (not sure as if this is more related to my embolism or if what im experiencing is due to GS), a general numbness in my body (not to touch but a struggle to move), i find it hard to get to sleep my brain wont shut down but when i eventually do get to sleep i find it hard to wake up, even if i sleep a good amount i awake feeling like i havnt slept in days.

I have flu-like symptoms always accompanied by a lower back pain swollen glands and a itchy burning sensation aggrivated by touch all over my skin.
These symptoms seem to happen over a period, gradually getting worse before they get better,, used to be over a time of around 2 weeks good 2 weeks bad, but recently things seem to have been getting worse and for longer periods of time 3 months bad for maybe 2 or 3 weeks of feeling good.

One of the first signs that I'm having an "episode" is my eyes starting to hurt (eye drops don't make a difference for me) and tingling in my fingertips and joints..if I don't address it right away then I get heavy fatigue and can catch a cold easily that lays me flat on my backside for a couple of days. another problem I have is even though I can get fatigued I suffer from insomnia..

Thought I'd had a reprieve from GS but for the last three weeks its back with a vengance. I have also suffered mega panic attacks, stomach cramps, IBS, really nauseaus, and generally feeling that I can't cope. Anyone geting really bad memory loss? Did you find that you became drunk very quickly? Sometimes just one drink makes me feel very tipsy and the following day I suffer with hang over symptons. My husband says I am now a very cheap night out.

I was diagnosed with GS about 8 years ago through abdominal pains and blood tests, but have not had many symptoms so far apart from always being tired and cold. However, in the last few months I have been getting pain under my right rib, which has turned out to be a gallstone

I was diagnosed last year (sept/01) with Gilberts. I'm 25 years old. I've had stomach problems for as long as I can remember. I was told I had IBS (my mother has IBS). This was untrue. I use to get stomach so bad I was doubling over and had to lie down. I was also fatigued all the time. Never had any energy, and couldn't have my stomach touched. Pain pills did and still do absolutely nothing for the pain. I take Milk Thistle and have been prescibed Elavil to relax my stomach muscles. The severe pain I use to have is gone. I don't get fatigued like I use to… I get depressed when my stomach pain flares up. Usually from something I ate, but sometimes I can't put it down to anything I had eaten or done.

I have real problems with blood sugar control and get hypoglycaemic easily, with shakes and sweating and really bad moods. I am occasionally yellow around the eyes and my skin itches like hell sometimes. I feel grumpy in the winter and need to get some sun around about February (I am in th UK) and my husband is only too well aware of the consequences of me not getting those rays! Sleeping 8 hours + is essential for me and I find it hard to function otherwise. I exercise moderately and find it beneficial. However, infections leave me low for months at a time.

I'm a 29 year old male from Melbourne, Australia. I was recently diagnosed with GS… My range of symptoms are as follows. They tend to cycle up an down - for a few weeks I feel not so bad, then for a few weeks I feel terrible and my body feels like its falling apart.

* Fatigue - sometimes so overwhelming that just lifting my arms feels like a big effort.
* Tiredness - I used to stay up all night writing my thesis a couple of years back. Now I am often falling asleep in front of the TV at 11pm-midnight. This was unheard of before. Sometimes hard to stay awake at work if I don't get plenty of sleep (I used to live fine on 6 hours sleep a night).
* Loss of stamina - in school I was a long distance runner. My stamina was my best athletic attribute. Now any intense athletic exertion wrecks me. Five minutes of basketball a few weeks back nearly had me throwing up. I was acting as if I'd run 10 miles. I also got this weird metallic taste in the back of my mouth.
* Poor immune system - when I'm going through a bad phase I get almost constant colds and/or throat infections, and I never fully recover before the next one starts. I also break out in a nasty skin condition that gives little blisters on my fingers and toes. The GS doesn't cause these conditions as such, it's more that it weakens my body's defences so I'm susceptible to a lot more things.
* Slow healing - I used to heal from cuts and wounds extremely fast, it amazed my wife. Now I heal very slowly.
* Tremors - I sometimes get mild hand tremors.
* Yellow eyes - my eyes are yellow except for a white ring around the iris. This is a blessing because the yellow isn't so obvious unless the eye is turned or rolled back. My skin has a general yellow tinge as well.

I'm a 32 year old female and I've been feeling dreadful for a few months… I feel nauseous most of the time, have no energy whatsoever, have a pain on the right just below my ribs and suffer burning type pains in my stomach. I have also suffered from dizzy spells in the last few months and an almost constant fine tremor all over my body, but especially my legs. I also find muscles 'twitch' uncontrollably in different parts of my body.

I have been feeling like I am stuttering. My husband says its like I have been drinking and I din't drink. I always have bloating and cramping and my muscles and joints ach all the time. I also feeel like I don;t get any sleep even when I have slept for 8-10 hours. One other one that I have noticed recently is my vision is blurred and foggy.

My 16 year old daughter was diagnosed with GS early on this year. This was after many months and dozens of blood tests and examinations. One doctor said that she thought she also had ME. My daughter had terrible fatigue, memory lapses, lack of concentration, severe stomach pains and headaches, yellow eyes, - the list goes on and on... We can always tell when a bad episode is going to happen. Her eyes become more yellow than normal and her skin is very pale. Her latest bout has lasted for about 2 weeks. For the first time she has been pysically sick instead of the usual terrible nausea. Painkillers and anti-inflammatery drugs dont work... Think we have found out why she has been so ill for the last couple of weeks. It looks like she has been worse 'cos of antibiotics she has been taking. They should not have been taken 'cos they are bad for the liver.

Pain on lower right hand side - almost like a hot burning sensation which can last for a few days, Tiredness - cant seem to get enough sleep, Need to pass urine often - esp at night, sometimes up to 10 times, Sugar levels - up and down like a rollercoaster, I cant seem to handle much caffeine anymore - I rarely drink Normal tea but I can't give up chocolate, I don't drink coffee or coke, General feeling of being a little bit poisioned - this tends to happen the day after I've drank alcohol but can happen at any time.

Daddydan77
Symptoms: alcohol-related abdominal pain

Dan06
Symptoms: alcohol intolerance

alcohol hangover lasts 5 days

dananna
Symptoms: low temperature

my husband was diagnosed with GS many years back.... since I've known my husband his body temperature, when normal, is 96.8 degrees.

I have fatigue and have been diagnosed with fibromyalgia but despite feeling very tierd I have problems getting the right sort of sleep or even getting to sleep sometimes. I had Yellow Jaundice at 16 and this hit me hard. In my 20's I suffered allergies... In my late 20's I was diagnosed with IBS... The biggest problem that has got worse over a period of time though has been the fatigue... I was also hit by a mystery viral infection and one of the things I suspected was Glandular Fever although nothing was ever diagnosed except GS. At that time it was the first I had ever heard of GS and knowing more about it has helped in some way.

I suffered from, and still get, the dry throat, recurrent sore throat, and I reported at the time I was very ill a strong metallic taste I had in my mouth. The metallic taste has not returned thank goodness. I did feel as though I had been poisoned. I had the worst times at night and would often have problems sleeping. When I did get small amounts of sleep I would often wake within the hour gasping for air and feeling I had just had an electric shock... I do sleep now but I am often woken by a sharp pain but mine seems to be in the lower back on both sides. This often lasts most of the day but can sometimes clear altogether but will return to wake me most mornings.

I get a problem now with general muscle aches, the literal pain in the neck, and of course the familiar fatigue.

In the early years it seemed to make no difference in a debilitating way as it seemed to be an inconvenience rather than an illness although my intolerance to alcohol was sometimes an experience I would rather forget (Bit of the never again syndrome). Things went downhill for me about eleven years ago after a viral infection. My intolerance of many drugs prescribed to try and resolve the problem only made matters worse. The long term effect of the viral infection left me with Fybromyalgia. I got terrible muscle aches all over. If I sat at the computer for even short periods my neck would ache and no amount of normal painkillers would even touch this sort of pain and discomfort.

When I was at my worst with an unknown viral infection I had the pins and needles and then a very strong taste of metal for some time. My sense of taste is still not what it used to be and my tongue, especially the tip, often gets sore for no apparent reason. The itching I get especially after eating and in particular over my back. In one spot on my left shoulder blade I could justify the use of a sanding machine at times but I can't reach! I get general itching all over including both my legs. I only scratch out of reaction I am sure, as it is the type of itch that I just can't get to. Often my arms and legs get restless and I just can't get comfortable no matter where I sit if you know what I mean. This leads to interrupted sleep and fatigue.

I am the mother of a 15 year old boy with Gilbert's syndrome. He seems to have extreme symptoms. BR 3.0 to 4.3, icy cold white hands and feet, fatigue, started with yellow eyes and skin but now looks gray and his eyes are dull looking. He does not tolerate fast foods. He has some tremors and twitches. He sometimes sleeps 12-14 hours a day when feeling like this. He has an intolerance to antibiotics and antihistamines... I would like to get a little weight on him as he is 6 feet, 135 lbs, but alot of time he is just not hungry.

Deano
Symptoms: (awaiting the board's return)

I am a nurse and have been wrongly diagnosed with Chronic fatigue, etc etc. I have exactly the same symptoms as you which come and go, with the only trigger being exercise (strenuous) that I have found so far.

I get severe cramping and nausea to the point of actually getting sick. Total fatigue so i dont even want to get out of bed, pale and some yellowing in the eyes. I've had many friends and co-workers comment on how i look sick (oh i feel so attractive on those days!) I get some depression (just the other day I told my boyfriend there was no way I could be happy with my life right now...poor him), but that isnt as consistant as the other symptoms.

I am a 21 year old college student and while I haven't been "officially" diagnosed, the doctor has actually said he's 75 to 100 percent sure it is Gilberts Syndrome. The doctor has ruled everything else out, including Lyme, Hepatitis, CFS, and other Liver problems. I've had a dozen blood tests, a sonogram, and an x-ray, and been placed on Zoloft for 6 months (which really tripped me out). My main symptoms have included severe fatigue to the point of almost passing out, nausea to the point of sickness, unexplainable chest and upper body pains (like mini-heart attacks, pinches, and needles), chronic memory loss, bloody noses, sore throats, complete apathy, depression, sensitivity to light, lack of appetite, and a dozen other things.

dmy222
Symptoms: poor memory, brain fog, ulcerative colitis

I get very bad short term memory for small things although have high iq, anyone else get these symtoms? (also get mental fogginess or inability to think clearly - mind wanders all the time) Also used to suffer from UC until had bowel operation.

I had glandular fever about twenty years ago, easily the worst illness of my life. I was in my final year at university and barely made it through, but the following year I had to drop out of a post-graduate course through sheer exhaustion. There followed a couple of years of fatigue and depression, but eventually began to feel normal again. Within the next few years I began getting symptoms of IBS - tried all the usual remedies without much improvement. It got worse, I started having headaches so severe that if I didn't lie down I fainted. I thought I had food allergies, tried different diets, eventually tried a detox diet (from a book by Jane Scrivener I think) definitely felt better

Dreading
Symptoms: poor memory

It never even occurred to me as a symptom, but my lack of memory would be funny...if it didn't impact the development of my career. I was having trouble passing the bar and did some cognitive testing. In most areas, analysis, long term memory, etc., I was in the 80th or so percentile. So I'm reasonably smart all around. And in verbal abilities, I was in the 98th percentile. But guess where I was with short term memory? The 17th percentile!!! 83% of the US population in my age group has better short term memory.

I was just recently diagnosed with GS. I had myself checked when my friends noticed yellowing of my eyes plus I have trouble sleeping (which I attributed to stress from work), tired a lot and I had chills, my teeth were chattering and I can't seem to understand why I'm always cold.

Feb 2001 started getting some abdom pains, did nothing about it,eventually went to doc in April , blood tests showed high numbers so sent to consultant, scans showed stones in gall bladder, gb removed in June - anaesthetic took hold for 3 weeks!!! head all over the place, felt remote and distanced, off work for 6 weeks

This site is full of people reporting a cluster of symptoms that I have had for years, like acid stomach, jaundice, nausea, panic attacks, itching, abdominal pain, IBS, lump in throat, etc. Also the experience of a viral illness earlier in life - I was in hospital in my early twenties with a mysterious virus and took a year to recover.

bad stomach aches and fatigue, garlic sensitivity... i tend to feel the worst at lunch or just after. i don't function well in the afternoons...i've been diagnosed with GS and while i suffer from fatigue, nausea, stomach aches... i don't get jaundice much. just sometimes when i'm sick from something else... i'm a 17 year old female from Australia, and after about 10months of medical problems i have been diagnosed with GS. originally i was really healthy and had no food intolerances (except garlic), then half way through last year i got this virus thing and i was really sick. i never seemed to properly recover. I'd frequently feel nauseous, loose my appetite and i was SO tired. i kept comming home from school and sleeping for an hour after getting 10-12 hours sleep the night before. i began to notice that i felt the WORST when i'd eaten highfat foods like chocolate and mcDonalds. consequently, i had a million blood tests and ultra sounds. abnormal high levels of bilirubin showed up and the doc thought that it was a post viral thing since the tests also showed up i'd had CMV and glandular fever at some point (apparently you can have it and never know)

frequent stomach pains across abdoman, shaking, usually at night, sometimes loose bowels, usually depending what i ate, very low tolerance of high-fat foods. find if i have a constant, small amount i still feel horrible. so no chocolate for me! the stomach pains are the worst. sometimes i find they hurt more if i'm lying on my right side?? i've also noticed that i tolerate fatty foods less when i have my period.

All these headache you are getting are from GS.. From my experience..when one eats something that is to heavy for the liver//Fat/Oil/Suger// one gets migraines. Its funny how the liver effects every part of your body.

i have other problems too, high blood pressure for which i take drugs and cholestral too,for which i take meds,i put palpataions down to blood pressure,but may it isnt. got new doc and routine test picked up bilirubin,dont know if he has looked at my records and sen i got gs or not,if he has may be he now thinks its some thing else,i have very dark yrine,does any one else? and get so dizzy. (Note: the cholesterol medication may be getting rid of bilirubin, causing the dark urine)

Prone to headaches leading either fainting/spaced out or right sided migraines into eye.- brain scans normal. Can only take low levels of alcohol, without severe hangovers, which is a shame. Pain/sticking joints in small fingers & some toes - checked out not gout or rheumatoid arthritis.

I think others have talked a little bit about this before on this site, but I, too, have terrible reactions from gas fumes, cigar smoke, certain perfumes, etc.....headaches, nausea, dizziness. I always thought they were allergic reactions, but could be this is somehow connected with GS. Also can't drink alcohol, especially red wine. The next day I'm bloated and swollen....and generally feel like crap. I also have tons of allergies...dairy, wheat, soy, etc. It will be very interesting to see if this is a comon problem with GS sufferers. Also, I have a low tolerance for medicines and have strong reactions to chemicals...gas fumes, etc. I also have a pain or soreness over the liver area, on the edge of and over the ribs. It's always there, but sometimes it's much worse. And the pain often wakes me up at night. My pain is usually over the liver area, near the edge of my ribs (of course, on the right side). But sometimes it´s even on top of the ribs. Sometimes it´s just a soreness, but other times, it´s sharper. Nothing really horrible, just bothersome more than anything else. But it won´t go away! And I can´t seem to relate it to anything I do or eat. I´ve had many tests, all negative, except for the GS. I also have headaches a lot...have all my life.

Exhaustion, which severely limits my social life, which few people are willing to understand, which severely limits my friendships, which is terribly depressing and isolating. So I'd say that fatigue, with linked depression and a sense of hopelessness, is at the top... elevated hemoglobin... GS diagnosis 29 years ago when they didn't know what caused it. Also have asthma, migraine… (Has trouble with paint and varnishes) I have to move out when the place is being painted and if a piece of furniture is refinished it has to stay in the garage for weeks. And it's definitely liver stuff, nausea, swollen & tender right side upper abdomen.

Blood work slightly abnormal with no real explanation
aneamia - possibly due to red cell destruction which can occur with GS HB around 10
Glandular fever two years ago, GS diagnosed at this time.
gallstones, due to red cell destruction

Gilbert & Sullivan
Symptoms: liver/gallbladder pain

GilbertMadrid
Symptoms: depression, IBS

I get bouts of deep, paralyzing depression on an all too regular basis. My mother has always linked Gilbert´s and the type of listless, melancholy I suffer for about one week out of every month but up until now I ignored this wisdom (will I ever learn!). My mother also blamed Gilbert´s for the IBS-like symptoms I present on a regular basis… The cycles of my bouts of depression know no logic. They come when I´m enjoying success in my work, when relationships are going well or when it´s summer equally as often as they come during rough times.

I have GS,low blood pressure,depression no pep.Don't like to go outside much.Im pretty antisocial.I don't like hot temperatures. I do also have a lump in my throat that comes and goes and was suspicious that something was wrong.I checked the thyroid and it came back normal.

Gmacek
Symptoms: fatigue, dizziness

I've also had more symptoms like fatigue, dizziness, which I've had on and off my whole life, etc.

its a stuggle to fully breath in. i was told it was due to anxiety and stress. (referring to heavy feeling, trouble breathing in) this october i started getting massive stomach pain. to make a long story short, after many many tests they found that my stomach lining has almost completely deteriorated. they dont know why, (mabey reflux) but while being treated for this about 3 months later they found out that i have GS.

I have been able to eat what I like all my life without putting on weight. The down side is that if I am stressed I struggle to eat which means I loose weight very quickly, I still force myself to eat 3 meals a day though.

My experience seems so typical of everyone else here - you'll laugh. A series of inexplicable symptoms, a visit to the doctor, two blood / urine tests for nothing specific. Diagnosed with GS, a harmless syndrome with no effects at all, apparently. As for my symptoms; tiredness and aching limbs, sweating, memory loss, brain sometimes feeling and performing like porridge, pain in lower right abdomen when ill / hungover / exercising – these were all a bit of a mystery according to the old doc, bless him, but definitely nothing to do with GS.

Glandular fever at 18 with recurrences, loads of antibiotics - I feel this is relevant in some way to the level of problems GS causes me. Thanks for flagging up the cyclical nature of the symptoms, everyone. One of my main symptoms is the need to eat regularly - I have major problems with weakness, feeling faint etc if food is late. I have to be very careful to eat food with a stedy release of energy.

General feeling of being 'toxic' - as though all the nasty stuff is hanging around my system too long - sometimes a cup of coffee can make me feel bad for a Bad handwriting - yes it's true, I've just discovered that any condition that affects the liver also affects handwriting - I had to change my sample signature at the bank because it had deteriorated so much - so we can blame that on the GS, too!

hally s
Symptoms: headaches, fatigue, black eyes, IBS

This same doctor attributes headaches, fatigue and black eyes to GS but can't see a link with the IBS symptoms (in my case, tests show problems with candida.)

Constant headache - worst in the morning when I wake up - assume it's because the bili levels are high because of overnight fasting
Blurred vision when the symptoms are worse
Naturally I'm depressed with all these symptoms.
Symptoms seem to come and go in a cycle - 2/3 weeks feeling awful, followed by maybe a week of feeling OK, before I enter another cycle - very disheartening to feel rotten again after starting to feel normal.

Yes, I think you and I have had the same thing--in terms of "panic attacks". I am usually sitting when I have mine, and I feel relaxed or at least not stressed. Then suddenly I get butterflies in my bowels (kind of like butterflies in your stomach, but it makes me feel like I need to go to the bathroom rather than vomit). Then it leads to that spasm and adrenaline rush.

I had GS diagnosed at about 30 after complaining of fatigue, dizziness and "brain fog" and awful need to sleep... My "usual" doctor, when I complained of fatigue, low blood pressure, dizziness etc, would put it down to stress, overwork and so on. He'd give me calcium and magnesium (which tended to help), a few days of rest and send me on my way. When the symptoms got really bad, specially dizziness, brain fog and lack of concentration. I quite often get small muscle tremors and twitches (in eyelids, fingers and so on) but these have always been diagnosed as indicating a "lack of magnesium" and not as being related to GS.

Here it is again. All the symptoms I used to have (I remember them like it was yesterday). Unbelievable, and brought on by stress I have no doubt... I had almost forgotten how awful this was, and I guess I thought it would not happen again since I take fairly good care of myself, but boy was I wrong. So much stress in my life right now that it makes perfect sense it should happen now.

Eight years ago I had my gall bladder + 28 stones removed. This took years to diagnose and I now realise that I had had the symptoms of stones since my early 20's (I am now 46). For the last 12 months I've had a very "eventful" time of liver malfunction and ill health, following a nasty viral type illness in Feb 2001. This 'virus' came back again in July & November and my symptoms have been constant since July - including constant ache and frequent sharp pain from the liver area, pale 'sludgy' floating stools or passing grey stools in yellow 'water', occasional nausea & retching 1st thing in the morning (I'm not pregnant!) mild jaundice, periods of rapid weight loss, fatigue, joint & muscle pain, itchy soles & cold feet, swollen hands, mouth ulcers, hair loss, recurrent cold sores, spots & cuts that don't heal, unexplained bruising on legs. The symptoms seem to come in 'episodes' and then I'll be quite a bit better until the next one hits. I have tried to relate them to diet etc - can't see a link but I have noticed that any physical stress, including exercise, colds and menstrual cycle, exacerbate the symptoms. My bilirubin levels have been all over the shop from test to test and my ALT levels have been slightly raised but constant throughout.

I have just been diagnosed with GS. I am experiencing a severe loss in appetite and also have mild nausea. The thought of not getting my hunger back is making me very anxious.

Jimi33
Symptoms: nausea

I was just diagnosed with GS a month ago after suffering nausea for the past 4 months. I have no symptoms, other than nausea. However, I never actually throw-up. I always feel as though I will, and a few times I'll heave, but not once have I vomited. The slightest amount of stress, such as the trip into work or being in large crowds, makes me ill. I have found that 'Tums' antacid provides a very temporary relief (suck on it slowly to make it last longer) but as soon as it's gone the syptoms reappear, though not as harsh.

Does anyone suffer from a 'foggy' head which can cause a variety of concentration-related problems (some of them quite funny)? In this state I find it hard to maintain listening to what someone is saying, or maintaining a thread of thought in an essay or suchlike. Other things are extreme forgetfulness, like I've walked into a room to get something specific and left with something else; then remembered and gone back in, but AGAIN come out with something else. I get words muddled up too. One typical example is getting first letters mixed up. Yesterday for example, I said "Hox Funting" instead of... well you can guess. I also get the lower back pain, quivering hand/wrist muscles, tingling legs and extreme fatigue, but I find this 'foggy head' to be the most frustrating/enjoyable aspect of the syndrome.

It started on a holiday in Malta in June of this year, I was vomitting, and severly dehydrated. I ended up in hospital and put on a drip and doctors said that I had gastroenteritis. For a few months afterwards I was suffering from nausea, vomitting, fatigue, abdominal pains etc and the doctors hadnt a clue what was wrong with me. I was being sick all the time and unable to eat - losing weight rapidly too. They did all kinds of tests including endoscopy, sigmoidoscopy, barium meal x-rays, ultrasound. I was poked and prodded whilst in pain but nothing abnormal was found.

Eventually the doctors said I had IBS and was depressed / stressed and this was what was causing the symptoms. I had been told I had Gilberts syndrome but that was besides the point as GS didnt have any recognised symptoms. After being in and out of hospital 5 / 6 times I was prescribed antidepressants, anti emmetics & and anti acid tablets for my stomach and sent home once again. The doctors were concerned that I was anorexic too and it was hard to convince them otherwise. All this not knowing what was wrong with me was making me very low but the reason for not eating was because I felt so sick all the time.

johnanimation
Age 33
Symptoms: weight loss, tremors, tiredness

I have had GS symptoms for 6 months now… I was living a normal life before and doing lots of sports. Physically I felt great. Now I lost 15 pounds and am just a shaky, weak, grey, and tired person.

Johnboy
Symptoms: itching, intolerance to carbs

Johnz8
Symptoms:
abdominal sensitivity

jonsher
Symptoms: tiredness

My son is a 100m/200m sprinter who has just been diagnosed with Gilberts Syndrome. The doctors say it will not affect his sport and when he is well it doesnt, however he has bouts of extreme tiredness which can last a week or more and he is unable to train.

Unexplained tummy aches as a child, glandular fever at 13, fatigue from then on (much worse in the past 18 mths falls asleep many afternoons and evenings) kidney stones, mid 20's. Routine bloodtest following stones revels Gilberts. his eyes are always off white and yellowish if he is down with anything.

I have many of the symptoms that I have read about on this great site, especially fatigue and general malaise. I also suffer from headaches occasionally. Strong smells, especially smoke, gas or diesel, and perfume make me feel very ill to the point of wanting to vomit.. For me, my skin is especially itchy in the winter and if I am somewhere there is a lot of smoke or other pollutants. It seems to help if I drink LOTS of water when this happens.

I had a cyst which turned out to be a bilirubin deposit... I had been diagnosed as having Gilbert Syndrome about 2 months ago... I suffered from anxiety problems, and went into depression... I am always tired, when ever I over exercise I get it worse: (takes me a while to recover). I was at some stages quite bad that I would nearly faint (not sure if this was anything to do with my anxiety attacks)… It does have the tendency to be quite debilitating. I began to get pains around my liver and a lot of gas... I have experienced the same thing with fumes of any chemical kind... Some days are better than others.
- when i feel hungry I can eat loads and not put on weight...
- hypotension (getting up from lying down and spinning out)
- numbness in certain areas (I had a pain on my left arm that freaked me out but dissapated the moment i lifted some weights on it)
I have had strange nights of sweating heaps... sometimes I wake up and my pillow is totally drenched... I guess the heat has something to do with it... but I haven't sweated that much since I had a fever...

i was diagnosed with gilberts disease today. i found out i had it by having some blood tests because i felt sick all the time. im 18 and ive suffered with depression for about 4 or 5 years and ive never known why. i cant control my emotions at all and this feelings of anger and sadness come on quite suddenly for no apparant reason.

I have to have a mask with me everywhere I go so I do not come in contact with ANY diesil fumes or gas exhaust, my stomach (liver) swells with any reaction to these with horrible pain for days. I am sick at least once a week with something. I have MANY allergies. I have an enlarged spleen. I have constant diarreah up to 4 or 5 times a day.. My Dr. prescribed Prilosec for my acid reflux. I noticed it said that if you have any liver problems you should not take it.

Kerrylnelson
Symptoms: depression

kevdarada
Symptoms: night sweats

I sometimes wake up and my top is completely soaked. It use to happen after weight training that day , but now happens if my immune is dysfunctional.

I was diagnosed with GS last week. I also suffer from IBS, diagnosed a year ago… my dr put me on the birth control pill among a few other meds, in which my reaction was to gain a great deal of weight in a short amount of time… Since that time, I had alot of trouble in school because I was always exhausted, even though I got at least 10 hours sleep each night… What I find, and always have, is that I have NO apetite. I eat alot of high protein, low carb foods. I make myself eat atleast 3 meals a day.. but it's hard getting the food down. My GS symptoms are: ALWAYS tired! Especially after I exercise - I exercise at Curves atleast 3 times a week, but find that I just have no energy to get started, and by time I'm done, it's bedtime for me. I get very dehydrated (even though I drink about 150oz of water a day). I have alot of "brain fart" (as my friends refer to them) moments. I can get very nausiated. I don't know if that is related to the GS or the IBS. I can get severe gas-type pains in my stomach and abdomin. My IBS is still not under control. It tends to run in a 2 week cycle: 2 weeks of constipation followed by 2 weeks of non-stop diahrea. I also have ALOT of allergies. Seasonal, dust, cats, some dog, most pain killers - morphine, codeine, naprosyn, penisyllin among others. I also get migranes. I find they tend to come only after eating high-carb, high sugar or sugar substituted foods, caffine, breads.

i have recently started to get weird tingling pains in my legs - something i cant really explain, but its like the nerve endings in my legs are tickling, or itching and i cant get to them - its weird and it usually occurs when im laying down. i have started getting a weird taste in my mouth - kinda tastes like blood, but when i check theres no blood!

I have Gilbert's, have battled severe PMS symptoms for 20 years or so. Now that I'm older (42) the PMS seems to be getting worse, especially headaches.
Since my early 20's (I'm 42 now) I have suffered from monthly migraine headaches, depression, anxiety, panic attacks (these are better now), obsessive thinking, bouts of itching, and fatigue. I have headaches that last for days. My doctor prescribed Imitrex (which is for migraines) and is very effective. I find this to be a very strong drug, however, helps me get through the day at work

My symptoms were very similar to yours, very tired, heavy, spaced out, foggy headed, drunk like feeling, wobbly legs, and sometimes physical shaking… I went to see an endocrinologist who admitted me to hospital for two weeks to run some thorough tests. His conclusion was ME/Chronic Fatigue syndrome.. But one thing that did show up in my blood tests results was that my level of cortisol in my body was too low. This is the hormone/steroid which regulates blood sugar and energy levels. I was put on a course of hydrocortisone (cortisol tablets) for 6 weeks – this made a huge difference, my symptoms reduced by 75%.

I have always struggled with my energy levels, especially when I had young children and a pretty hard back-to-the-earth lifestyle. I ate pretty healthy food throughout... I'm particularly interested in the foggy brain and poor memory stuff on the website. My daughter and I both suffer acutely from this and beat ourselves up about it, but I've never connected it with GS. Just thought it was another crummy thing she'd inherited from me!

I have horrible memory too. I have to write everything down. Shopping can be a real problem I have to take a list, but writing the list can be a problem too.
Even conversation is a struggle recently, can't seem to be able to form whole sentences - forget whole words. So I've become withdrawn, don't tend to join in as much. It's as if there are several loose connections in my brain, sometimes they work and sometimes not... I have to write everything down, especially the kids activities or I'd forget to collect them. I worry that one day I will, as I still have to try and remember to check my lists!

I was recently diagnosed with Gilberts after having too blood tests done on my liver with readings between 43- 57. Of late i have been feeling breathless and having a heavy feeling similar to that of asthma, but do not have the wheezing of asthma, and can still reach reasonable levels on a peak flow meter. My problem is with getting air in, not out.

Pain in right side (liver), left (spleen), nausea, lump in throat causing me to gag and stop eating (theres a name for it which I don't remember, its the liver saying don't send me any more food, I can't PROCESS), muscle pain (like lactic acid buildup but for no reason), headaches, such total fatigue I could barely walk, restlessness and insomnia, pains in my neck (glands) so severe I couldn't turn my head, indigestion/stomach problems so bad I had to sleep sitting upright... I was VERY lucky that, tho I now know the symptoms are shared by many of you with GS, I was able to find out the true cause of them. I had a toxic reaction to toner dust from laser printer which was malfunctioning in a non-ventilated area. It took a year to figure out and another year to recover, mostly by my own research of symptoms and changing to as close to a zero fat, low protein diet (to let liver work on toxins not fat) and vitamin regimen.

Madmother01
Symptoms: IBS, tiredness, lethargy, muscle twitches

Marcusserrano
Symptoms:
fatigue, brain fog

mark23
Symptoms: tremors, tiredness, panic attacks, insomnia

Markd
Symptoms: stomach pains, chest pains

markskur1
Male, age 19
Symptoms: abdominal pains, IBS

My 19 year old son has been diagnosed with GS. He has been suffering severe abdominal pains for a year, has had EVERY test: Ultrasounds, MRI's, CT-Scans, ERCP.. his "liver specialist" says the GS is benign, and he has IBS. They even removed his gall bladder in June, and he is still suffering as I post this! He is an active college student, who is having problems attending class because of his stomach pains. The only thing that calms him down is constant showers.

I just had a hell of 3 weeks with real bad nausea. I felt like I was going to vomit but nothing came up. I too have had gastric reflux for a few years but thought it was due to CFS/ME and not GS. I know I have Gilberts syndrome, cos it came back with high bilirubin almost ten years ago when i had a sudden onset of dizziness and concentration problems and fatigue. This was said to be Post-viral fatigue syndrome or ME. it must be ME what I have had for 10 years, although i seemed to recover twice. Now I am going through a bad patch again with fatigue and cognitive symptoms (do u get brainfog....where u can't concentrate and it feels like cotton wool in ur brain!)

I first started to notice that I just couldn't stomach the beer anymore, and hangovers got unbearably long... Now I have to avoid too much alcohol or junk food, or normally just leave it out altogether, else pay the price... My main problems are indegestion, constant acid stomach and tiredness, with a lots of discomfort under the lower left rib (I'm guessing this is my stomach as it's always worse after a meal?). Bloated stomach after eating too much or the wrong thing, and general short sharp abdominal pains during digestion, plus slight yellowing in the corners of the eyes when feeling rough. The fatigue is also a bind too, I need a solid 8 hrs sleep else I feel worn out.

I have felt terrible, non-stop, for the last six months. Here are some of the symptoms I have felt (tell me if you can relate to this)
- terrible fatigue, mid afternoon I feel i NEED to sleep.
- aches and sometimes crippling abdominal pain
- palpitations. Quite disturbing at times
- dizzyness. sometime like be perpetually drunk
- headaches - the pressure can sometimes build up
- intollerance to alcohol. major hangovers after 1 or 2 beers
- neck and back pains.
“Being permanently drunk” was the only way I could describe the 'foggy' head to the doctor.
I get palpatations too, and my blood pressure, EKG, and chest X-rays were all normal.

My brain-fog has always been an issue. I used to say that it was like my head wasn't connected to my body. Sometimes I find it impossible to concentrate when holding a conversation or in a meeting (its almost as if I don't even hear the other person talking).

Im 25 and was just diagnosed with GS after doing some blood work due to stomach problems. My question is does anyone feel strange after eating? Sometimes I feel fine but yet other times I get very bloated and feel wierd almost like I am getting tingling sensations in my arms.

Im 24 and just got diagnosed with gilberts. For a quite a while ive been throwing up all the time in the mornings, muscles ache all the time, im always tired. Also it aslo explain why after a couple of beers i feel really pissed and get the mother of all hang overs.

I am 19 years old and I was diagnosed with Gilberts syndrome about in 2000. I began to feel tired and weak after working over Christmas, my doctor told me after one set of blood tests but did another to confirm it wasn't any other liver disease. At first the symptoms were just constant tiredness, which I put down to working a lot of overtime. As I had more and more experiences of GS I noticed that I felt paranoid when I was out in public, as if people were watching me and because I was also feeling slightly depressed this made me very unhappy.

Back in January, I started to not feel well. I was exhausted all the time, was suffering from anxiety and lost weight… I continued to feel exhausted, and had the fever for 2 1/2 months. I felt anxious and was getting extremely stressed. At times I'd feel nauceous, unmotivated, and I was starting to get depressed. Usually the party girl, I was not going out at all, not organizing parties, and I was losing contact with friends. My boyfriend said he couldn't even remember what I was like when he first met me (about 4 months before all this started). I would say things to my boyfriend like, "I feel like I have bile running through my blood - I know that's impossible, but that's how i feel," or "I think I have Seasonal Affective Disorder, I feel better when the sun's out!" My tolerance for alcohol went down. One time I drank one glass of wine while out with friends. I felt like I had poisoned myself - I coudl feel it running through my body, and I felt awful. Other times, I was ok to drink - one night I had about 2 1/2 beers - I got completely drunk, and the next day I was so hungover, I felt like I had gone on a bender... I do get fatigued very easily, and sometimes I just have weird sensations - like it feels like my brain is cold. Strange. I still feel anxious sometimes, but now that I've learned that it's not becuase I'm crazy, it's because of something going on inside my body, I'm able to deal with it better. I'm also noticing that I feel waves of anxiety/tiredness/weakness after meals.

MistiB
Symptoms: jaundice, abdominal pain, fatigue

Recently we decided to paint our house and the night of I started experiencing GS symptoms. I started getting abdominal pains and every time I would eat I would get sick for 3 days. My eyes turned yellowish and by the 3rd day I had no energy to walk down the hall.

I have been so fatigued that I have been sleeping for 12 hours at a time and still have trouble getting up. My muscles are aching like a bad flu, and my glands are swollen in my neck. I have no infection, nor a viral illness that I am aware of. I have seemed to be getting episodes closer and closer together... I am feeling really weird today with it seeming like the floor is moving up and down and back and forth. I'm afraid that I'm going to fall or walk into a wall or something. Every time I get up I am so dizzy... Now my muscles are twitching and I have a pins and needles sensation all over my body... I have been getting awful esophagus spasms that squeeze all the way down into my chest, extreme fatigue and nausea, and also a headache when i am feeling this way.

I was diagnosed about 7 months ago. It started with (what I know now to have been) a huge panic attack, something that had never happened to me in the past… Anyway, the fuzzy, numby and tired feeling would not go away, so the same week I went back to the doctor and he noticed I looked a little yellow.
I run 3 times a week, about 40 to 50 min sessions. Sometimes it wipes me out and other times it makes me feel great. I think it depends on what level my Bili is at.

I'm 33 and have recently been diagnosed with GS... I think that eating lots of white wheat based products makes things worse for me, seem more foggy and find things more difficult to recall in my brain. The other day I had to ask my partner what the band that Freddy Mercury played in was called, and then 2 minutes later I had to ask him again... my memory is hopeless too, but not all the time, seems to be effected by things, if only I could work out what.

When I am affected by this illness, I throw up about twice a day, and the symptoms go for about 2-3 weeks. It comes and goes. I get extremely fatigued, and weak. I can barely get out of bed to go to school. I also lose my period when this happens.
Some of the symptoms I get from GS are:
1. Vomiting- usually about 2 times a day. (my particular case is on and off. My bouts with the illness last about 3 weeks, and go away for about a month, and come back for about another 3 weeks.)
2. Fatigue- I get tired very easily. Getting out of bed is a big ask for me.
3. Weakness- Lifting my head, or my arms and legs is extremely difficult. Sometimes I feel like I can't move, and that I'm immobile.
4. Dizziness- I feel very lightheaded, and feel like I'm continuously drunk...not a great feeling.

I've always suffered from fatigue since my early teens. However, problems really kicked in when I fell asleep for two hours after eating a chocolate bar… I get most of the symptoms described by everyone else here: Fatigue (some days I can't even move), Brain fog to the point where there are moments where I can't even remember the names of friends, pale yellow eyes, a digestive system which acts like a cement mixer and depression.

- Bloatedness (suffering from it today even though I haven't eaten much!!)
- Extreme tiredness, sometimes too much sleep can be as bad as not enough
- Dizziness, especially when I stand up quickly. This has gotten worse over the years and had an effect on my vision. I'll explain below.
- Nausea. Especially in the morning. A kind of motion sickness feeling...never enough to make me heave but irritating all the same. I always have breakfast too, even with this feeling.

I am 22 years old. I was hit with gs this past summer as well as something called cmv. MY cmv is supposedly gone into remission so I am only dealing with GS now. I have read this whole forum and I have experienced basically every symptom mentioned.

cough for seven years,sometimes so bad I had to vomit.
undertemperature(35,7 -36,5)

NikkiUK
Symptoms: poor memory

Niky74
Symptoms: tiredness, fatigue, headaches, abdominal pains

I often feel so tired that even after 10 hours of sleep feel I could drop at any time, I also suffer frequent headaches (at least twice a week) which I always related to the tiredness. I also get abdominal pains if I don't eat properly which I always put down to wind.

- often feel better in the evening
- not been able to find a pattern as to when I get sick
- similar symptoms to hyperventilation. I don´t breath fast, but get a prickly feeling around my mouth and in my hands.

Yes, I have exactly that problem! But especially with short term memory like, "what happened this morning again?". I've thought for a while that bread made me worse so it's good to see someone else has similar symptoms.

this whole last year... i am very dizzy feeling, looking beyond 10 feet (especially disoriented walking and or doing any physical stuff, like lifting..).. blurry vision on and off (even tho a new eye test was good).. just feeling very yucky all day, but night comes, and i seem to start to feel normal.. have the "shakes" in both my hands, here and there, especially if i don't eat right away.. panic attacks.. irritated easy (thinking it was the humidy and heat).. my arms seem to go a little numb (tickles) laying down, like i fell asleep on them.. i had tooth pulled, and the dentist gave me antibiotics.. had a chest flu right after that, and was also put on antibiotics.. and thinking back now, that was about the same time i started getting these symptoms.. in the states, i hardly ever had antibiotics except for major problems (like an severe ear infection).. i see some people here seem to have the same trigger that may have started the gs.. also i have had a fair share of stress, mother and sis died, big move to australia, work has slow down greatly, marriage probs, etc. etc.. and then the stress of not knowing what this dizziness was scaring me to death

nullcontext
Symptoms: poor memory, dyslexia

My memory sucks. But I'm also dislexic... It seems to fluctuate from day to day. Some days it seems I have a great memory and other days I can hardly remember my own name.

About 18 months ago I started having episodes of what I have come to call my 'Dreaded'. Symptoms are extreme fatigue, a feeling of a black fog in my head and an irrational depressed and irritible mood. Symptoms appear on waking, last between 1 day and eight days and then disappear completely overnight.. I have not been able to identify a trigger, although my two worst episodes were after a bout of flu last spring and then after a flu jab last autumn. I have had many episodes however that have just come out of the blue for no apparent reason.

Diaorrhea coincides with menstrual cycle (mid cycle and during menstruation so may not be relevant to GS)... Symptons escalated 6 years ago coinciding with me giving up caffeine (which apparently reduces bilirubin). Have always struggled to recover from illnesses and viruses. Have prevously been diagnosed with post viral fatigue, stress & depression

Pagiboy
Symptoms: multiple chemical sensitivity

I have troubles with common consumer products, like soaps, shampoo, laundry detergent, cleaning chemicals, etc., basically anything with a fragrance or scent. So, I live a fragrance and chemical free life and practice isolation and avoidance. I wear a mask when I drive and venture out into the public for doctor visits, grocery shopping, etc. My social life is limited to the phone, TV and Internet. I feel like I am being tear-gassed or will fall to the floor when someone with perfume/cologne walks by me. I first noticed my sensitivies to cigarettes. They always bothered me, but suddenly, they really became troublesome, and then more and more substances started to bother me, to the point where I am sensitive to just about anything now that is even slightly toxic.

I too am irritable and kind of dizzy at times (usually when I'm o/tired). I always used to be fairly irascible but now get very cross with people, whereas I used to be able to keep the lid on it. Also am fairly emotional and am easily moved to tears (usually of frustration or self-pity: I'm not ashamed to admit), whereas formerly I would have committed ritual suicide rather than cry in public.

Yellowing of eyes and skin, fatigue and feeling weak after exaggerating on fat food or after taking drinks with a high rate of alcohol
I also had some digestion and oesophagus problems in the last two months but with the aid of some digestion pills they seem to be going away.

I have had this symptom in conjunction with acid feeling in the stomach and feeling "bile" in the back of the throat. Was diagnosed with Gilberts but also had liver/alcohol issues. Since cutting out alcohol altogether 12 months ago I have had a vast improvement of all the Gilberts symptoms. Also found doctors dismissive of Gilberts. I had glandular fever when a boy and have never felt brilliant since. Have frequently felt the "nagging infection that won't go away" feeling. Does anyone else get the horrible taste and sort of itchy furriness in the mouth?

Do you ever feel like your tongue is swollen in your throat? I have problems recently trying to swallow vitamins - they get stuck. In the last year or so I have had a very dry throat. I also get a very itchy throat and ears!... I lose my voice after one night out in a noisy place these days - do you reckon it could be related to the thyroid tissue buildup/swelling? I also had glandular fever... I have dry throat, dry eyes, lips, and low saliva together with recurrent mouth ulcers... I have been doing a Candida diet (theory of yeast overgrowth in the body that can cause many symptoms - similar to those of GS!) which cuts out all sugars that yeast feed on - it seems to have cleared up the mouth ulcers pretty much for now... the pain is real and it worries me, along with worsening fatigue, brain fog, nausea, irritability, continual flus and colds

i have been feeling bad for 1 year 4 months, now i got cold/flu type it felt morphed, never went away, felt TOXIC, really sluggishly, after tons of test, got slapped with GS label, and doctor trying to push anti-deps on me... I have had symptoms similiar to yours the past month and half. This is so wierd, how long this lasts. I'm started to feel brain/fog. nerves. Mostly because of how long this has been going on. I do not feel nausea now, but i feel tired alot and my mind I wanna go play soccer and run around, but my body is sluggish... My symptoms seem to come in cycles now for the past 4 months… I well start to feel better for a week or two, then i well feel the (GS) type symptoms for a week... Mainly when it starts i feel the fatigue, sluggishly, toxic feeling, then the anxiety or nervous feelings, then the stomach stuff. this lasts about a week, then start to feel better, never 100%, but then in about 2 weeks or so it starts over again.

SEVERE insomnia due to cold sweats and itching
SEVERE night sweats (Bed soaked, have to get up)
insommnia maybe due to other problems, but often wake up throughout the night
Back and joint pain (symptoms of swollen lymph glands, made me paranoid about many other conditions)
My ankles burn like hell if i stand up for more than a minute or so. This is actually more annoying than any other symptom, and gets no sympathy from others. I have a varicose vein, but gp says not related, and it happens in both ankles.

I was diagnosed with GS 12yrs ago when I was 18 and still have swollen lymph glands under my jaw and side of neck. They have never increased/decreased in size and sometimes ache when tiered or suffering from the common cold. My Dr advised that this was to do with my lymphetic system not being able to filter the bile correctly.

my main symptoms of gilberts involve stomach problems (nausea, vomitting). I also get panic-attacs and anxiety triggers, but I'm not sure it's from gs. ... I'm a nineteen year old girl, and at fifteen I got diagnosed with GS… It all began with a schooltrip to Italy (I'm from Holland). In Italy I got really sick, with really vague symptoms. Felt awful tired, and really nauseous. Couldn't eat, except for some fruit. Didn't know what was wrong with me… Back in Holland I recovered a bit, but a few weeks later I felt really bad again. I was soooooo tired. My mother thought I had Pfeiffer so I went to the doctor, and he took some blood. It seemed I had 'hay fever'. I was allergic to grass. He explained that that was the cause of my tiredness. I got some anti-allergic-pills (forgot the name) and indeed, it went better. Until a month or so later. I felt really tired and nauseous all the time, and after every meal I got sick and had to vomit.
My symptoms are:
-Tiredness. It has been a long time ago since I really felt energetic. After eating I'm really really tired.
-Nausea: this is the worst symptom. When I have my 'attack of GS' (it goes in waves), I feel nauseous when I wake up, when I have had a meal, when I'm hungry (I have read a post where someone wrote that he/she could'n distinct nausea of being hungry. I have the same; sometimes I just don’t know if I feel hungry or nauseous), feel nauseous when I have had exercises, when I made an effort, and even if I laugh to much! I feel like I have to vomit, so I have to keep myself really calm, to get rid of that feeling.
-Vomiting. There are times that I basically FEEL that my stomach is twisting.
-Stomach problems. Includes stomach pain if I don’t eat exactly at dinnertime. If I eat some time later my stomach really hurts. I’m kinda allergic to some foods, like real fatty foods, spicy foods, milk (not always), oranges and soda (drinks with bubbles ;-)…). I don’t drink alcohol at all.
-Lack of appetite. Everything smells awful and I can’t decide what I would like to eat, because it looks all disgusting.
Sometimes I’m hungry, and my stomach feels empty, but it feels like there’s something stuck in my throat. Then I have the feeling I just had a big meal, but my stomach is empty. This is really strange, because I don’t know if I feel hungry or full…… A very bloated feeling.
-Anxiety. Feeling nervous all the time, and don’t know for what. This makes me feel depressed.
I know it’s not all physical, because I had a time I was scared to go to public places because of my fear of having to vomit in public, but it’s not all in my head either.
-Jaundice. The skin under my eyes and mouth is sometimes yellow. The corners of my eyes are usually yellow.
-Foggy head, lack of concentration. Maybe because of the tiredness.

Rachel
Symptoms: jaundice, fatigue, feeling sick, weight loss

When i had my child i toke jaundice and from then on i have sufferd from energy lose and sickness. At one stage i droped to 7stone and had to give blood samples.When the results came back i was asked if iwas an achoilic because my white blood cells where raised. Then after more test they found i had gilberts syndrome.

Im exactly the same in terms of the cycle: (my symptoms seem to come in cycles now for the past 4 months… I well start to feel better for a week or two, then i well feel the (GS) type symptoms for a week.)... My doctor was convnced i had an overactive thyroid due to sudden weight loss, tremors, brain fog, cold extremities, dizzyness, balancing problems, yellow eyes and a high bili count - but normal thyroid levels... For years i have had slightly yellowish eyes - especially in the whites below my pupil. I never worried about it because my doctor told me that there was no liver disfunction when i was 16.
From about 2000 onwards i suffered occasional dizziness, caffiene and alcohol interolance, and visual focusing problems. I assume these were caffiene use related and ignored them, as i was generally quie fit and well. On the 22nd of October last year I went to bed feeling unusually tired. Before doing so I had a shower and while there noticed that my left nipple was slightly swollen and sensitive to warm water. I didnt think much of it and went to sleep. I had pushing myself hard to get fit in the three weeks before this night. That evening at 2amish i awoke with a fluttering/pounding heart beat and breathlessness. It was as if my chest was being smothered and i couldnt get enough air. My body was trembling furiously. I went to the bathroom and realised that i was suffering visual disorientation - everything looked strange and double. I felt like i was trembling inside like a fever, but without the increase temperature and i was very pale - almost yellow. I went to emergency and had my heart and thyroid function tested and it all was apparently normal. They could find no reason for my condition and sent me home telling me that i was suffering 'anxiety.' Since then i have been to doctors, endocrinologists, naturopaths and a whole host of others to try and work out what was wrong with me... I got told i had Chronic fatigue/ME when my doctors and endos were at a loss - I was first diagnosed with a thyroid disorder, then low cortisol, then hypoglycemia, but the only test that consistantly came back weird was my bili levels which were 22 to 42 (reference normal below 15). I get dizziness/spaced out/ positional confusion (like my head is all over the place)... One of my main symptoms was caffiene intolerance - it makes me feel duzzy and spaced out so i had to stop completely... my doctors have no idea what is causing this - originally it was suspected that my thyroid was overactive - as i have a family history of this - but all the doctors ive seen say that my results are just high normal and not 'high enough' for my symptoms. Other doctors have suggested electrolyte imbalances, chronic fatigue, strange viral infections, or just my mind (the old i cant explain it therefore you must be going mad)... ive had these (referring to heavy feeling, trouble breathing in) on occasion and sudden heart palps- i had an attack while visiting my doctor and he confirmed that i showed no signs of anxiety or stress during the sudden onset of these symptoms
-periods at night of breathlessness and sudden heart beat
-considerable weight loss- from 78kg to 66kg
-mental confusion - feeling off-balance and dizziness
-occassional fatigue - as if my head it too heavy to hold up with my neck alone

Rammy77
Symptoms: fatigue, stomach cramps, bloating

ranayM
Symptoms: liver/gallbladder pain

Yesterday I had felt alot of pain on my right side below my ribs and it hurts alot. Sometimes when I'm sitting it dont hurt as much but If I move or am walking I have to be slightly bent over cuz it hurts. I cant lay down or much of anything else without it causing pain. I dont know if it'd just be gas or something else, I've tried some pills for indigestion but nothing works.

I was in pain from walking alot just after dropping crutches after a tendon surgery and also hadn't eaten for 5-6 hours. It did feel like I was dying. After a meal and overnight sleep I was improved but it still took a few days to recover. Sorry I don't have a recovery solution better than that. Mostly what makes me feel crummy is fatty food or stress or poor rest… It is the worst about 1-2 hours after lunch.

Rheannon
Symptoms: vomiting, strong hangovers

I have the same thing! I call them my 3 day hangovers! So I just dont drink anymore, I throw up for 1 day then sleep for 2 without eating at all.

My reactions to anesthetic, my fatigue, and weakness if I don't eat, which seems much greater than the general population, and many, many other little things that fit in nicely with what I've learned here (for example turning a bit yellow sometimes, intolerance to alcohol, and strange reactions to drugs (as if I've taken much more than I really did take))... I had developed an allergy to garlic which I was taking daily, I didn't know about allergies at that time, so I was just too sick to eat. The doctors said it was all in my head... My head was too screwed up for me to figure it out for a long time, but finally some extensive allergy blood tests revealed it. By that time, I had developed allergies to MANY MANY MANY carbohydrates, and now, to all of the ones I've tested... I do have a natural tendency to allergy anyway, basically stuff like dust mite and almonds, but NEVER this many

I am a 29 year old woman just diagnosed with GS. I have experience rapid weight loss, stomach pain, fatigue and headaches... Right now I am having more bad days than good and I would like that to change so that I may be more productive.

stomache cramps at least twice a month
sometimes severe cramps that put me in hospital
very tired all the time but cant sleep and when i wake up still feeling tired
headaches most days
acheing legs sometimes pinns and needles
feeling shakey like im nervous sometimes
i have been having these symptoms for the past 5 years

I have had symptoms similar to that of a diabetic for many years. Constantly low blood sugar, Shaking, Lethargy, Iritabilty and steatorrhoea. My blood results in the past have never shown anything specific, apart from this sudden revalation that I have Gilberts Syndrome. Im not sure how others feel, but i cannot function during an average day, my body has very low levels of energy and generally after ny form of excercise i tend to either collapse or notice the signs i.e stars and dizzyness and grab a cartoon of ribena or a glucose substitute to correct it. Other things i have noticed are:
Photosensitivity (Sun light is very painful especialy during summer months)
Extreme Migrainous headaches, virtually every day
Dry and itchy skin sometimes forming hive like reactions all over my body
A worsening of all my symptoms during hot days and especially over the summer months.

For years i have had the following symptoms: tiredness, bloodshot eyes, unable to focus, lack of coordination, mild stuttering, actually feeling tired to talk, anxiety, nervousness and not feeling good especially after eating carbohydrates.

Apart from usual fatigue and pressure in the head...i also feel this vomiting sensation in the morning...if i take 3/4 glasses of water all at a go in the morning after waking up i will surely vomit...as it is prescribed in yoga..and relieves overnite acidity..
---Fatigue is my biggest problem..say after lunch in the office i will start feeling weak in my shoulders and my legs will start feeling weak"somebody said feels as if they are made of jelly"...
---can't resist hunger..will have weird head feeling if the lunch/dinner is an hour late..
---Shaky feeling as if i have lost my body balance

Yes this tiredness is a problem for me too... I can't drink alcohol like I used to... I do get a bit depressed, maybe due to the usual Stress that everyone gets but the tiredness gets me down as I used to have bags of energy... Also my eyes get a bit glazed over too... Feelings of being irritable, not patient... I used to feel quite light headed after exercise and thought I was unfit but maybe it was the GS thing. I get a bloated stomach sometimes and depression but I try and keep positive about it.

In November, whilst doing various DIY tasks around the house i started feeling hot, nauseous, dizzy and developed what felt like a hair caught in my lower throat. I went to the Doctor and said i was concerned about the throat and was given a course of antibiotics. From 2 days in to the antibiotics my health has gone haywire. The nausea got stronger and it noticeable waves throughout the day, my eyesight deteriorated and when the nausea was strong i would see yellow flashing specks in my vision which would last for weeks at a time. I struggled against whatever this was and tried to keep active but the effects got worse and my initial throat senstaion disappeared to be replaced with the most sore aching muscles frpm jaw to upper chest. The sensation was of being physically strangled and then it would ease and I would find myself yawning continuously for 5 minutes. The whole of my mind and body had a feeling of being drugged on amphetamines. My sleep was poor, getting to sleep difficult and upon waking I felt totally groggy. Then I developed muscle aches, twitching and spasms down left leg and right arm to which the doctor prescribed drugs for shingles, not surprisingly this had no effect. He surmised that I had been wiped out by a virus in November (the antibiotics helping the virus) and because I was run down and stressed I failed to fight it off properly. The virus had knocked my liver out and he said I suffered from Gilberts Syndrome and was now suffering from Post Viral Fatigue, or Chronic Fatigue Syndrome otherwise known as ME.

A thorough medical check-up a few year's ago identified that I'd inherited GS from my father. Like him I have the classic symptoms - get tired easily (need nine hours sleep most nights), prefer low-fat 'dry' foods, can look jaundiced from time to time, don’t feel good after drinking alcohol, occasional poor memory and foggy brain etc. Recently though I've been experiencing some additional problems - abdominal pain seemingly caused by indigestion and now, a swollen thyroid on my right side.

scs0
Symptoms: itchiness

It's interesting that you mentioned itchiness. I haven't noticed this is a while, but years ago when I would run for a long distance and then stop my body would suddenly itch all over.

I have had IBS for a long long time until realized that it wasn't normal to have diarrhea for years at a time. My bilirubin is generally 2.1 to 2.5 though once it was .6! but that was after swimming in the Caribbean for a month and eating the food down there --- very little IBS at the time as well. I always feel like my bowels are burning and swollen before a bout of IBS… I have GS and IBS and believe I have a sensitivity to gluten as well, because every time I eat bread it makes my abdomen burn and swell... needless to say I have been on a gluten free diet for a while now

After getting an attack, my skin becomes pale and puffy, noticable around my face. My eyes also sting, about an hour after the offending food. I get the twitching sensation right under my ribs on the right. Sometimes it's a twitching, or a small pressure feeling. (Note: Sounds like gall stones)

Sellew
Age 40
Symptoms: jaundiced eyes

I am 40 years old, was diagnosed in my early 20s, but dont have any of those other hugely visable simptoms like vomitting, depression, fatigue, etc. Only the Yellow Eyes

2 stubbies (beers) and I`m finished with a bad hangover the next day.
-Got GS Early Thirties
-Could it be linked with Hep B protection shots as my body could not billed up a resistance to it.?
-Got heart Pulpitation around the same time. Avoid white bread, short bread biscuits and basically fine flour and it decreased dramatically

I'm almost a year into studying a PhD, and have been increasingly worried about how little energy I've had recently. In December, completely without explanation I fainted while showering - now I realise that extreme dizzy spell could have been caused by GS. I've been on anti-acne antibiotics, and had assumed those were making me feel itchy; again, now I think differently… I also had some bowel problems a few months back (which have largely cleared up since I increased my fibre intake) - and every now and then, my head has felt foggy, almost blank in fact. Since I started showing signs of jaundice, this fogginess has got much worse, and I seem to forget random things occasionally too… I've had periodic bouts of depression since my teens.
constant headaches, eye strain, yellowness and fatigue

over the last two months the fatigue has got quite bad (the other symptoms such as abdominal pain lack of appetite, mood swings eg irritability are common and do bother me) however the fatigue has made me very depressed

As I read the thread further I've found that most symptoms of ME, especially sleep reversal, are also freqent in my life. Maybe I'll go to doctors with that too.
I don't have problem with the loss of apetite (unfortunetly) quiet the contrary, I'm almost always hungry and/or craving for chocolate...*sigh*

I also have are nausea, dizziness, brainfog, painful periods,immense discomfort in the ribs above my liver, white spots on my lower legs, a terrible depression that descends over me when I realise I have to think of something I can eat and in my case severe acid reflux.

sjparnell
Symptoms: liver/gallbladder pain, tiredness, dizziness

My main symptoms are occasional pains around the lower part of my right side rib cage/liver area, occasional tiredness (which often seems to bear no relation to the amount of sleep I've had) and dizzy spells (not falling over, but feeling slightly unsteady on my feet).

The other thing I've always suffered with is dodgy guts. It doesn't take much to get them really rumbling (especialy at night), with excessive wind and bouts of diarrhea. It's rare for me to have normal movements. Something I've got used to over the years. Bowel problems seem common in GS sufferers. I've always been thin, but have been at 11 st for several years now.

About 2 and a half years ago, over the space of a couple of days I began to feel very groggy, very fatigued and as if I was completely drunk. I had to stop driving for a few weeks but it very slowly came right… It was not until about a year and a half later, at a time that was very stressful, that the symptoms returned. This time even worse. The drunk feeling was extremely debilitating , I couldn't think, could hardly see straight and could not drive again… I had another "attack" several months later was very low and sick… Part of the problem was that the only way I could describe my symptoms was as feeling really drunk all the time, and sooooooo tired, you body is not tired but kind of like my head was so tired. I was sort of ok when I woke up in the morning but after about an hour I felt like I "HAD" to go back to bed and just wanted to close my eyes… I battled on for maybe another 12 months coping but still only at 50%... It was one day that I skipped to meals that I noticed something weird. My senses had sharpened slightly and I felt more alert. But as soon as I ate, I suddenly felt very drunk again....weird......it gave me a new angle. maybe something to do with food. I was tested for allergies , blood sugar and hypoglycaemia...... all showing up nothing. But when the bloods came back (and this is only a couple of weeks ago) that he said that my bliburbin was raised to (24) and that it was Gilberts Syndrome

my 17 year old son was diagnosed in october with gilberts - he had a real bout with mono and became extremley jaundiced with high bilirubin counts. he also tested positive for epstein barr. his mono symptoms (enlarged spleen etc) have gone, but he is left with incredible fatigue,abdominal pains and turns yellow when he does something physical. last night he ended up in the emergency room because the pain in his abdomen was so bad he needed morphine. they did a CAT scan, everything (spleen, liver etc) looked good but his enzymes were high

I'm 16 and 2 weeks ago after drinking with my friends I was diagnosed with Gilbert's Syndrome. I had stomach cramps, severe fatigue, loss of appetite and my eyes were yellow

Spaghetto
Male
Symptoms: headaches, abdominal pain, nausea

my boyfriend has just been diagnosed with GS yesterday... he lives in italy and has been suffering of very bad headaches for years! lately he had often abdominal pain and nausea and almost all the other symptoms i've seen described here.

4 years (I was 23 back than) ago my girlfriend dumped me because I wasn't so lively anymore as I used to be. I was really depressed because of this and I drank every day a lot of beer for 10 days because it was just 10 days of Ghentse Feast in my hometown Ghent. After those 10 days all the trouble began: I was really tired, I had like some weird fog in my head, a really weird fealing I never experienced before. I couldn't concentrate, fell almost asleep in the car, started crying every five minutes. The doctor took some bloodsamples and noticed the huge amount of bilirubin in my blood ( like more than 10 times the normal amount)... I had GS which was not so weird because some in my mothers family also have it.

I did OK through high school but sometime around college I started having periods of time were I would go into a funk, where I would feel listless and depressed and had trouble sleeping. On average it might happen one month a year as well as an occasional 2-3 days mood shift during the good times... I hit my worst funk recently when I broke up with a girlfriend, who I thought I was going to marry. I got some blood tests and found I had a high bile count. The first test was 1.8 the second was 2.5. I have had stomach problems and sleeping problems throughout the last 4-6 weeks... I have always had a hyperactive bladder. I might urinate 10 times a day and might have a bowel movement 3-4 times a day -- often twice in the first two hours after I wake up. Those numbers go up when I am stressed, like I currently am. I'm not sure what irritable bowel syndrome is exactly.

Sportstud6987
Symptoms: tiredness, poor memory

I am ALWAYS tired. I used to be the one person that people could tell something so that i would remeber it the next day..but i cant seem to remeber an hour later.

It all started in Jan 7th with an attack of heart palpitation, head spinning (tripping out feeling) sweaty palms, head pains, couldn't walk properly or talk properly. Since then I have felt ill. I have had many tests done but all negative. Apart form my bilirubin of 101!!! Therefore GS!!!! The symptoms I have had are heart palpitations, constant dizzy ness, short tempered, head pains, numbness in head, side of head and face, seeing things in corner of eye that are not really what they first appeared to be, kidney pains, stomach pains, back pains, leg pains, chest pains (very painful) feeling tired, depressed, hands feeling like not in total control, shaking, brain dead, feeling very nervous all time, muscle spasm, panic attacks, yellow eyes, loss of appetite (lost 2 stone) feeling like @#%$ 24/7 and probably many other symptoms.

GS & severe PMS since I started mensturating at age 11. Most pronounced symptoms are emotional/cognitive: depresison/anxiety, inability to concentrate & recall......of course, these are the symptoms that affect me the most right now since I'm a student. As for physical symptoms, the worst is the debilitating cramping and vomiting that happens if I do not medicate at the very MOMENT I notice cramps starting. I end up in bed for most of the day. Other annoying though not limiting symptoms include remarkable camel-like ability to retain water and breast tenderness.

my husband has gs... yellowing of eyes made worse by alcohol (as are most symptoms he gets)
sensitive skin (hot baths can leave him blotchy, esp on his face, sometimes just touching or rubbing his eyes will flare up red patches)
it seems to be in a 3 month cycle he will feel poorly with gs. I wondered about libido, his libido is constantly at a low.

If these toxins are in too abundant of supply, then your body starts to consider them an invader; it's something out of control in the body. I had this type of thing happen with certain carbohydrates to me.

Sunniedays
Symptoms: fatigue, strong hangovers, anxiety, depression

problems getting out of bed in the early morning, EXTREMELY bad hangovers

I too suffer from terrible memory for 4 years now. I tend to speak very carefully now. My brain won't co-operate iwth my mouth to allow me to get the right words out or I simply forget what I was saying or the word I wanted to use... I have found it very differcult to try and loose this excess weight. Excise just seems to make me more tired and so you just feel like not doing it to lesson the tiredness.

I was diagnosed with G.S when i was 16,which funnily enough was when i started going downhill,Now My yellow eyes is something i hate,but really they are the least of my worries,its the chronic fatigue,and mental foginess that depresses me,at my worst episodes i feel like my blood is aching and that im being pulled down,i feel unreal,and after a week of that feeling,i start to lose it mentally,thinking i may not recover this time

I am a 32 year old English teacher. My physical problems concerning Gilbert Syndrome started after I came down with mono. It took several months for me to recover from it, but when I did I started experiencing IBS and other digestive problems… The IBS continued sporadically over the next five years. I tried to pinpoint a certain food that would trigger it, but nothing was consistent. This past summer was the climax of my Gilbert experience… I had difficulty digesting food. I was constipated, had stomach cramps/pain, felt nauseated every morning and during long periods of time when I didn't eat, and was extremely fatigued... This doctor told me the stomach pains must be stress related, and that I should find ways to decrease stress in my life. I thought this had some legitimacy, so I tried to change some things, but nothing improved. Then, this same doctor told me it might be gallbladder problems, and sent me to have some tests. No cysts, stones, or unusual developments were discovered. They then did tests of my digestive track, taking scans of food as it was processed. After two of these tests, and scoping down my throat, they found me to be perfectly healthy. We ruled out allergies, food poisoning, and dietary influences. I was normal in all accounts except my bilirubin count, which was more than double the normal amount... I have similar abdominal pain towards the right side just under my rib cage. The doctor thought it was gallbladder problems due to the location of the pain. However, those tests came back negative. After I eat, I also feel great discomfort, almost like I'm going to explode, even if I only eat a little bit. I find myself holding my stomach, or stretching to make room (as if I'd eaten a huge Thanksgiving dinner). Afterwards, the food rumbles in my stomach and causes short burps and mild acid reflux. I feel like I'm going to throw up, but I don't. It really is rather uncomfortable. The only source of comfort is to lay down flat on a couch.

I was doubling up with stomach pain and vomiting, at the time I wasn't jaundice at all, just occasionaly tired. Its only recently, in the past couple of years, that my eyes are yellow all the time, sometimes completely, other times just around the edges. If I push myself when I'm tired my face goes yellow and my eyes feel like theres a cloud over them. The tiredness can be very debilitating… My eyes are very sensitive to light, I have to wear sunglasses even if the suns out a little... My temperature averages about 97.5 but can drop to the low 96.

Troy
Symptoms: jaundice, fatigue, loss of appetite, brain fog

I had my first dose of antibiotics for a simple ear infection at age 20 (last year) and ended up yellow, fatigued, loss of appetite, no energy and brain fogged
My eyes are back to white, so im guessing my bilirubin levels are back down to normal - but i still have weird (brain fog) feelings in my head.

1. Yelloness of eye which increase upon exertion or if i miss a meal or at the end of the day when i am tired.
2. a dull ache,rather a feeling of my liver under my right ribs usually when i am tired at the end of the day.
3. feeling of lump in the throat relieved by burping.
4. more frequent burping than other people.
5. tiredness,irritability and depression(feeling of no pep) during the afternoons and evenings.
The pain under the right ribs usually occurs at the end of work(around 6 in the evening). I am tired and i feel miserable.

I've gone into shock numerous times when I've overwhelmed my liver. (For me it was alcohol, sleeping pills and a really deep massage) When in shock, I get thirty, shiver, sweat, feel cold. Water and protein help get over this. I still feel tired for a couple days after.

I was diagnosed about three years ago when I was 21 by accident. I was having dinner with my mother and I was so jaundiced she made me go to the emergency room. I had thought I had GS for years before that occasion. Like you I had been very sick with mononucleosis in high school and never really recovered. I was always yellow with high bilirubin levels but the doctors I saw never diagnosed it. My symptoms are all the same as yours (me: nausea, fatigue, loss of appetite, abdomen pains, shaking, loose bowels, low tolerance to fatty foods), however, I don't take multi vitamins because of other blood disorders that I have. I feel shaky if I don't eat regularly but sometimes I know if I eat I'll throw up! My doctor had me have my gall bladder removed; he thought that was causing my jaundice and malaise (and I had some small gallstones) but it didn't help. If anything it made it worse as now there are very few things I can eat without being "sick"! ...I get muscle twitches all over as well, mostly in my arms, legs, eyes and back... Since being diagnosed I've modified my diet and exercise and I've never been very big on drinking. These things have seemed to help, however, I have two big problems... Problem one..I have insomnia, so getting to sleep is not an easy task! Normally, I require 9 to 11 hours of continuous sleep to feel "normal" with minimal yellowing, abdominal pain and other GS symptoms. In reality, I only sleep five to seven hours a night. most often, I feel as though my brain won't shut off. I feel exhausted all day, but when I try to sleep I can't. I've tried taking short naps during the day but when I wake up I feel disorientated and "foggy". When I do get to sleep at night, the next morning I feel like I can't wake up. There have been many mornings when my fiancee has had to physically push or drag me out of bed!

I used to get headaches for days at a time, and found I had to resort to painkillers, if I was at work. If I was lucky and it happened to be the weekend, then a couple of huge glasses of water and a couple of hours extra sleep helped. I've found that I haven't had them though, since getting my inhalant allergies treated with weekly vaccines

I was diagnosed with Gilbert's Disease by my Gastro doc last summer... I have learned alot about Gilbert's since then...and it perhaps answers why I get so horribly fatigued when I over due it physically. I feel ill for 4 or 5 days afterwards.

I was recently diagnosed with GS... Before I was diagnosed last year, I didn't know what was causing me to lose interest quickly in jobs. I'd lose ability to concentrate, I'd be irritable, anti social,(withdrawn), It got to the point that I started a a small company so I could work for myself and therefore be able to set my own hours and schedules.

wnickel
Symptoms: panic attacks, heart palpitations

I also get palpataions several times a day and I panic, but try not to.

Jaundice is clinically detectable when the plasma concentration of bilirubin exceeds 30 mmol (2 mg/dl). The discoloration of jaundice is most noticeable in the sclera, the nonpigmented thin skin such as the inner pinnae and caudal portion of the hard palate.

Jimmy T
Does anyone suffer from a 'foggy' head which can cause a variety of concentration-related problems (some of them quite funny)? In this state I find it hard to maintain listening to what someone is saying, or maintaining a thread of thought in an essay or suchlike. Other things are extreme forgetfulness, like I've walked into a room to get something specific and left with something else; then remembered and gone back in, but AGAIN come out with something else. I get words muddled up too. One typical example is getting first letters mixed up. Yesterday for example, I said "Hox Funting" instead of... well you can guess. I also get the lower back pain, quivering hand/wrist muscles, tingling legs and extreme fatigue, but I find this 'foggy head' to be the most frustrating/enjoyable aspect of the syndrome.

ramakentesh
ive been suffering all of the above for about four months (foggy head, difficulty following a thread, extreme forgetfulness, mixed-up words, lower back pain, hand tremors, extreme fatigue, tingling legs).

BaiCam
I am 45 years old and was diagnosed with GS when I was approx 25 years old (I say approx because I find it very, very hard to remember events) and have experienced all of the symptons you have since I was about 14 years old. Up till that point I was considered very bright (I still am but that is through sheer effort on my part!) then somewhere between 13 and 14 the 'fog' set in. I was becoming more and more forgetful, unable to recall conversations that I had had a day before and if something had happened more than a week prior then just forget it! If I was reading a factual account of something, I could read a whole page of text, understand every word but I simply could not retain any information unless I read the damn thing 3,4 or 5 times.

That is still the case today. That is where the effort comes in. My choice of career is a constant headache as it changes constantly and I am expected to 'know' everything related to that career. I am an IT Manager and I program using VB Access. I refer to help files for routine that I have written dozens of times and should know of by heart. Sometimes I will go back to a database or a program I have written and I will not be able to recall writing the associated script!

I am unable to have decent conversations with people because I am simply unable to recall the everyday events that everyone takes for granted. I get exhausted trying to listen to other people talking to me, I can't tell jokes because I simply cannot remember the tale in it's entirety, I tend to hold very short conversations to keep me sane and as a result , I am sometimes cosidered to be 'alloof' in my attitude.

As a result I have a very small circle of friends. Most people I know are considered to be 'acquaintances' rather than friends.

The only thing that helps me is when I get a very, very good night's sleep. Then I wake up and 'attack the day' but otherwise I suffer as you do.

Me:

Yes yes yes! This is exactly what it's like for me as well, and the brain fog is definitely the worst part of it all. I wonder how much of my life has been a result of this?

I used to be extremely bright, naturally, without effort. I excelled in all areas, especially math and english. The slow decline from GS began probably in my mid 20s, and by now it is in full swing. My mind is foggy, clouded. Things that used to naturally occur to me get lost in the fog. The natural state is lying on the ground staring into space. So any activity, like writing this, is an effort of will.

My memory is terrible. I, too, often go into a room for something and completely forget what it was, the repeat this process. I have to leave myself notes and send myself emails so that I get done what I need to. Otherwise I'll just never think of it. Two days in a row this week I forgot to bring my lunch in to work, and only after posting a sticky note reminder in my car did I successfully remember to bring in lunch.

I was talking to some friends recently about college, and was hearing stories that I was a part of, as if I hadnt been a part of. They were only vaguely familiar to me. My friends were amazed that I couldnt remember it. Even events a day ago I have trouble remembering. A week ago? I'd better look it up.

I'm also a programmer, and I find myself constantly looking up functions I've used hundreds of times, having to constantly remind myself the syntax for very common things. It's very frustrating.

Socially, I find people able to bring a whole week's worth of interesting topics to the table, while I can remember nothing, and can barely keep track of the conversation. It's just horrible. I also have only one or two close friends and the rest are aquaintances. I couldnt handle any more!

It appears SAMe and Dextromethorphan have a positive effect in this regard. Almost a complete fix. But at rare times I feel a little.. off. Slight paranoia. Red Bull also helps a bit. I think I'll have one right now, in fact.

Brain fog is the symptom that got me researching into what was wrong with me back when I had candida. I had long been used to being a bit absent minded, but brain fog is a nightmare of not being able to think coherently. It feels as if your mind is encased in cotton and nothing’s getting through. Another symptom of a brain that isn’t working right is aphasia, the inability to recall words or attention deficit disorder.

Candida leads to brain fog because having systemic candidiasis means you’re constantly drinking alcohol, as yeasts convert sugars into alcohol. This also congests the liver, another major co-factor in brain fog. If the liver, the filter for blood, is congested, it cannot take toxins out of the bloodstream fast enough. These toxins will pass the blood-brain barrier of the brain and deplete the brain of oxygen and glycogen.

Another culprit that's gaining popularity is the high-protein, low-carb diet. If the body becomes overtaken by nitrogen (proteins have nitrogen, carbs do not) you'll actually become mineral and oxygen-deprived. In this case of brain fog, breathe into a paperbag for about 5 minutes or less to flood the body with carbon dioxide. That will help replace oxygen and strip out excess nitrogen.

rBuckner
My memory has been getting worse but then I'm 48! Perhaps the tiredness and brain fog so many mention are closely related. I do experience these symptoms.

kdhsgf
I suffered from serious memory loss... not so much long term but short term... Not so much now due to my diet changes... I remember (excuse the pun) asking the doctor for my prescription script... and what do you know? It was in my hand... I seriously would forget the tiniest of things... It sounds like brainfog to me... due to high levels of toxins floating around they tend to seek refuge around brain tissue... I am so glad I don't get those annoying eye pushing head aches anymore..

claire16
yea i so sufer from memory loss, i also get bad brain fog it is worse on certain days. i am 17 and i got diagnosed lst year

Me:

My memory is terrible. More so at certain times than others. I have to make lists, and keep an army of sticky notes all around me. I often have trouble finding the right words, too. I'll be in the middle of a sentence, and know there's a word that perfectly expresses what I want to say next, but I cant for the life of me think of it. I'll also fade out in the middle of a story and forget where I was going. It's really aggravating.

We could maybe make some progress investigating other conditions that cause this and trying to find links to GS.

Headaches

Me:

I'll add my name to the list. I get awful headaches that last for days. At times they wont even respond to 2 doses of Advil or Aleve, like the one I'm having right now. My sinuses often hurt at the same time, though they are not stuffy, and the headache is on the sides of my head as well as behind my eyes.

The last time this happened it seemed related to high pollen counts, even though I'm not allergic to pollen. I dont know what would be triggering this latest episode.

I wonder if I should try migraine meds. I've seen migraine described different ways - some more loose, such as any headache that lasts for days, and some more strict - such as you have to have visual disturbances as well.

gaylemex
One thought about food allergies......I´ve found over the years that the more I restrict my diet, the less foods I can eat. And if I totally eliminate certains foods from my diet for a while (say, 2 or 3 months) my body seems to tolerate them in small doses later.

SumariMike
As far as ketosis goes, well, I was on the Atkins diet twice. I lost 16 pounds in 3 weeks the first time and felt great. The second time didn't lose a thing. I ate more quantity the 2nd time and wasn't as dilligent with the metamucil. It was... uncomfortable. But, I had no trouble otherwise. Just don't exercise a lot during it. GS sufferer's livers can't always provide converted energy fast enough and you will get freaking tired when you exercise and have a low-carb diet.

rainbowwarrior
Yeah, me too. Never had any problems with milk, until I got my first GS-wave (about 4 years ago)...Since then I seem to be quite intolerant to milk.
Stomach cramps, vomitting, nausea etc. But not always; if I'm relaxed and don't suffer from the GS symptoms (or not so heavy), I have litte problems with milk.

roddyrain
Has any of you guys been treated for depression?
I'm a GS patient and lately I've been treated for depression, and I'm on medication (fluoxetine) and psycotherapy.
I'm trying to pinpoint whether there is a connection between GS and depression (which includes in my case, fatigue, crying and sadness for no reason, lack of appetite, apathy, etc.)... My depression is not SAD, it is there most of the time. I'm on antidepressants and I am doing fine now.

WhosGilbert
Yes, I've had depression too in association with GS. I've been told by more than one doctor that GS is definitely linked with depression and anxiety/panic attacks. I've had my fair share of battles with the lot, and have only in the last six months improved greatly (I was diagnosed 15 years ago). I have this site to thank for my improvement, as it's only really been through trying out some things mentioned here that I've found some peace with my body at last, and also therefore the panic/depression.

Hayesmoore
I too suffer from depression and GS. more specifically i have SAD winter depression. I have looked at the possible link between depression and GS.

carenmarie
yes i have had depression and also took fluxotene but mine was put down to post-natal but that was before i was diagnosed. but the symptoms were the same loss of appetite, missing meals crying fatigue... i am sooo tired but i cant sleep

New Gilberts Sufferer
I get extremely tired coping with GS, and I find it hard to fall asleep. Sometimes takes me hours. I get extremely depressed...cry over nothin.

savvy9
I suffer from GS and suffer from depression and anxiety.

DaveH439
Many of us with GS get depression and anxiety. I was taken down the road of antidepressants and had a nightmare with those. I had a bad reaction to all of them so I looked for other ways.

bammam
i also had epstein barr virus at xmas, and that didnt help, i suffer palpitations, anxirty and depression, chronic tiredness

DerekUK
Yes, the two go together. I have suffered from GS & Depression for years. Tried anti-depressents. I suggest you steer well clear of Prozac as the GS will hang on to the nasty chemicals in your blood and you will go from zero to euphoria and back like a yo-yo.

kdhsgf
I am currently suffering from depression and am taking doxepin... I was having problems also sleeping too (which I still do) but I have cut my dose to have a pill... will work my way to eventually ridding myself of this medication... I take also Temazepam just to help me when I get really bad (cause it can get quite full on). I have only had it for about 2 months now... I have had the random sandness (which eventually makes me cry) which I think crying is a good thing (cause I feel better after it)... I had moments where I was quite suicidal as I was completely lost and felt helpless...

Kerrylnelson
Yes, me too, have suffered with depression for 6 plus years before GS was diagnosed!!

koko6ka
I suffer from GS and depression + panic disorder. Now I find out htat they are related

parkin98
I've been depressed before and taken a number of different medic'ns. I know the feeling so well that that's how I knew I wasn't depressed when I saw my Dr in Jan this year! I found Prozac to be effective one time - it worked like magic - but when I've taken is since all it's done has made me feel sick. (It made me feel sick the first time as well but I was so high, I didn't really care.) My theory? SSRI's presumably only work when the depression is caused by low serotonin. As SSRI's haven't even touched the way I feel, apart from making me feel nauseous for three days a week, I guess the low feeling experienced in GS isn't caused by low serotonin.

Me:

I've been depressed for periods of a few months maybe once every 2-3 years since I was around 16. Sometimes it gets really bad. But I always feel really low energy. I made the mistake of trying to attribute this to thoughts, people, and relationships and no doubt caused a lot of extra misery in the process. But in the last five years as my life has become more regular I've watched closely, and seen that it's physiological.

And now, for possibly a stunning discovery. As I finished my latest test - an attack on Candida, to no effect - I decided to investigate a hunch. I've found that cold medicine like Dayquil or Comtrex Cold & Cough not only has made my cold feel better, but also righted some wrong that has always been with me. In a certain way, I felt wonderfully better.

Yesterday I decided to test that medicine again without being sick at all, but feeling the usual Gilbert's symptoms - depression, fatigue, headache, brain fog, general pain and so on. I took the cold medicine, and soon I was feeling SO MUCH BETTER. It began with yawning and my ears popping a lot. My voice then felt more intimate and close. Then my headache faded, I felt more relaxed, and my hands became warm. My mood improved, my fingers got swollen, and I felt mentally solid and present. I also felt social and friendly. It lasted all day and brought me around 180 degrees from how I was feeling before.

Today I'm testing it with only one of the active ingredients to see which one made the difference. I went with the most likely candidate after researching them - Dextromethorphan. I bought Honey Cough Robitussin because it didnt have any alcohol, and I took some about 40 minutes ago. My ears are popping, I'm yawning, everything is getting soft, I'm beginning to feel better. I'll post again later with how I'm doing.

dananna
my husband was diagnosed with GS many years back.... since I've known my husband his body temperature, when normal, is 96.8 degrees. Has anyone experienced this as a symptom of GS?

Eric
I'm new to GS myself and have no useful information for you except to say I also have a low temp, its always been 97.5 consistently and my eyes are bloodshot as well as a bit yellow.

TrinityOnline
I've been diagnosed with GS for about ten years now, but recently came across a web-site called www.wilsonsthyriodsyndrome.com, its a thyroid condition that does not show up on blood tests but is recognised only with a low body temperature, and some of the symptoms shown by GS sufferers. Mine averages about 97.5 but can drop to the low 96. Low body temperature is also a symptom of an underactive thyroid, before blood tests, taking the body's temperature was the only way of discovering this condition.

Me:

I started investigating my body temperature after seeing the relationship and similarity in symptoms between hypothyroidism and GS, and having my own reasons for suspecting hypothyroidism (trouble swallowing, heavy amounts of soy, freezing cold hands and feet, matching symptoms). I started measuring it a couple months ago in April, when it was cooler. My temperature ranged usually from 96.9 - 97.9. For those using Celcius, 98.6 is normal body temp in Farenheit. I noticed a trend, though, that as the days got warmer, my body temperature rose. At the end of May the range was 97.3 - 98.4. It's the thyroid that regulates body temperature, and what this seems to be showing is that it's not KEEPING my temperature low, it's just LESS ABLE to raise it than it should be.

I will do more measurements as the summer warms and in the winter to see if this trend continues.

brett
When not feeling 100% and my GS is giving me problems i tend to get an all over feeling of pressure (hard to describe) in my lower gut and sometimes its more concentrated in the centre right where my ribs meet.. When you talk about a pain under your rib do you mean below your rib or behind ur rib. Iv been getting constant pains behind my ribs and a feeling of being restricted in my breathing, this pain is sometime brought on really bad by twisting, to much physical activity or if i sleep in a strange position

SarahB
I usually have a pain most days, although sometimes can be worse than others and I think this depends on what I've eaten. Has anyone found anything that makes abdominal pain better or worse? I usually get my pain on my right side under my rib, although I do occasionaly get it on the left… I tend to get mine what seem to be underneath my ribs, and they are certainly made worse if I lie on my left side.

Daddydan77
Alcohol seems to be the only thing that will consistently cause them.

Desmo101
eating sugar and anything that contains it... most of the time for me it ffels more like pressure or a muscle spasm... on the right, around the last rib.

AKJoy
Yes, I do get those odd pains just under my ribs, only on my left side… I have found that sugar seems to be a factor, as well as alcohol used to be. And it does affect my breathing, making it difficult so that I want to lay down and stretch to undo some unknown obstruction

Me:

For me the abdominal pains only became noticable recently, after a course of antibiotics. It was about that time that my reaction to carbs intensified as well. It happens often after I eat. My whole abdomen feels bloated, under pressure, uncomfortable. I especially feel it in my liver area - the center and of a bit to the sides of my lowest ribs.

There was a time when I felt odd sharp pains on the left side, quite different from the usual abdominal pressure. I saw a doctor about it. He said this was where my spleen and a loop of intestines were, and that he hadnt heard of spleen pain, so he guessed it was intestinal.

I had recently started eating yogurt and probiotics, and for three days I felt completely better, euphoric even, and ocassionally felt these pains in that area. I thought for certain I had a candida problem and that it was being solved, but after the first three days followed a month of regression, being more foggy-headed than usual, and I eventually stopped eating yogurt and probiotics.

The doctor said the spleen is like a big lymph node and processes out infectious things, and so maybe there was a slight candida problem, and the killed-off stuff was causing the spleen pains. I dont know.

But when the abdominal pressure and discomfort comes on, I often take SAMe, Taurine, Cysteine, Methionine, and milk thistle. I generally feel a bit better afterwards, but it's a slow, vague improvement that also could just be an effect of time.

Nausea

Me:

I'm curious about this, as it's a symptoms I have never had. What I do feel is a tightness and pressure in my liver, which is right above the stomach, behind the lowest ribs. Could anyone be mistaking the sensation of a bloated, pained liver for nausea and/or stomach pain?

I know, it's not likely.

The reason I bring it up is this - a few years ago I had incredible pain in my lower abdomen. It turned out to be a kidney stone, but I wasnt aware of that at the time. I mistook the pain to be in my stomach, and in reaction, I threw up. Now the kidney stone didnt have anything to do with my stomach, but I made the connection via thought and easily caused my stomach to react.

But I'm aware that nausea is quite a different beast from pain, so I realize this is probably unlikely and for whatever reason, I just dont have this symptom in the mix.

Jeanneke
Also (but I have no idea whether this is related to GS) I've itched very noticeably while breastfeeding my two first children.

Naomi block
I remember being told that itching is a sign of the liver having problems detoxing, I get it sometimes particularly when I lie down at night to sleep.

Azvessey
The skin works in a very similar way to the liver with detox and metabolism of consumed substances. When the liver fails to keep up with demand for whatever reason, the skin has to try to finish the job, but the skin, as a detox organ, is no where near as efficient as the liver in doing this job, hence the itching. (In my opinion)

Johnboy
the web site seems to suggest that increasing your carb level would be a good thing, so I've been increasing my fruit and veg level and inadvertedly reducing my protein level since I am not eating cheese. This has in a nutshell increase the itching rather than reduced it

pete1959
I had recurrent bouts of itching over the years, always getting worse after I've been in bed for an hour or so. Registered with a new doctor recently and mentioned the itching - oh that will be your Gilbert's she said. I doubt it will help most of you but I've found a one a day anti-histamine to really help.

Dudeyindiechick
I get itching towards the end of the day, from about 7 or 8 at night. It's generally my arms and thighs, but it used to be my hips that would itch.

auggie
Is anyone extremely sensitive to certain smells? I had a package of paper and when I opened it had a strong odor (i'm sure from the dye) and it made me feel very ill for a few hours and I did not feel better until I ate something. I got a cloudy head, nausea and very tired.

imgeha
this is multiple chemical sensitivity or MCS, which occurs when the Phase 1 metabolism of the liver works much more quickly than the various Phase 2 pathways, of which the glucorinidation one is sluggish in Gilberts people. You may be able to increase the rate of the Phase 2 detoxification pathways with various supplements and thyroid treatment, and by avoiding drugs like aspirin and benzodiazepines, but it helps to know which specific pathway is giving you the problem.

ajay
Although I love to sail and never get sick. Put me on any diesel type boat and I will immediately get seasick (really bad). I used to think that it was an equilibrium thing, but having sailed for years I never experienced it once. Put me on a fishing boat, ferry or whatever and almost as soon as I smell that fuel...I literally get sick in my stomach, start sweating and turning purple.

SumariMike
I have been on many boats in my life from small fishing boats, canoes, whatever to large cruiseships. The only time I ever got naseous was on a small diesel powered tender on the way to an island in the Bahamas. The boat was rocking heavily and the engine room was just under where we were sitting. It was a 30 minute trip and by about 10 minutes, I was thinking I would puke.

Naomi block
I never would have connected this up, but yes I hate the smell of diesel, just the scent of it makes me turn green. I used to do alot of long ferry crossings and couldn't go outside if the wind was in the wrong direction. But it could just be that I am highly sensitive to smells and nothing to do with GS, smoke, perfume, fried food etc can't deal with them at all.

Me:

I didnt know multiple chemical sensitivity had to do with the imbalance between phase 1 & 2, which to some extent affects everyone with GS. I'm going to have to look more into that.

I wrote about this briefly in another post, but most people with GS have mutations in UGT1A6 (running at 50%) and UGT1A7 (running at 16%), and the latter deals heavily with processing carcinogens from carbon-based smoke, including that from cigarettes, car/truck exhaust, and wood fires. These things all have a strong negative effect on me.

I also am strongly affected by nail polish remover, varnish, and other strong fumes.

ramakentesh
In relation to the hypoglycemic problems - my blood sugar levels have been quite low from the onset of my symptoms. People with chronic fatigue syndrome have impaired glucose tolerance and have a higher than normal lactic acid level. In fact, there was talk of a diagnostic test for CFS based on lactic acid serum levels.

...reactive hypoglycemia and feeling shaky and weird if you miss a meal or dont get your food on time are also reported in CFS. Could it be that gilberts sufferers are more prone to CFS because of detoxification insufficiencies, or could it be that the enzyme we lack is playing havok on our glucose metabolism?

Hally m
I'm sure GS sufferers are prone to being labelled with CFS - particularly when you consider that CFS is still used as a catch-all term. Fatigue, headaches, digestive problems, aching limbs - all relate to poor detoxification (ie GS) and CFS.

I am very interested to try and work out why hypoglycaemic problems might link to GS as this is a big problem for me and seems to be for many others! I know the liver plays a part in storing glucose - but does the lacking enzyme relate to this?

Ramakentesh
glycogen is the enzyme that metabolises glucose in the liver and aids its storage.

Chakotay67
Now i am 250 lbs and the and trying to exercise only makes the symptoms flair up for me.

TCOLLINS
I too used to be very active, Dancing, swimming, going to the gym, but I find that this makes the fatigue, headaches, dizziness worse. I have since had to stop doing most of this and have put on a lot of weight as a result. Obviously this is depressing.

Me:

Perhaps that's the point at which your endorphins kick in.

Mine are less helpful. Generally after exercising, I have a terrible throbbing headache for about 10-20 minutes before the endorphines decide to pick themselves up and make me feel better.

ClaireS
I've only recently found out I've got GS... I have been experiencing the symptoms you describe of pain over the right ribs and burping for quite some time. In the past three or four weeks I have had a feeling of a lump in my throat, with food seeming to get stuck at the bottom of my throat and a constant itchy, irritating feeling in my throat... Incidentally, my thyroid results have all been normal and he said he could not feel any enlargement of the thyroid gland... sometimes I am aware of 'acid reflux' and have a burning sensation in my stomach. However, I've also noticed an increase in wind over recent months and a constant need to burp (sounds delightful doesn't it !!). I sometimes get trapped wind and a real stabbing type pain in my chest which is only relieved if I drink a large glass of water and can then burp to relieve it.

jeelbear
I've had the lump in throat thing for a long time but I never connected it to GS.

WhosGilbert
I too have both GS and a lump in my throat! I've had the lump come and go over about four or five years now, and have noticed it definitely is biggest in conjunction with being EXTREMELY fatigued.....have had thyroid tested by blood and scan...found thyroid O.K. but some "inflammation in surrounding tissue".Feels like I swallowed a bl*%$y golf ball! It's noticeable from the front and side like a small goiter, and makes it very hard to talk or eat! It does come and go though. Does anyone else have this as severely? My GP said it could possibly be due to a virus attacking the thyroid. I also have CFS, after glandular fever in 1990, have had meningitis TWICE, and bile duct blockage, (all between 1990 and 1992, I STILL have CFS NOW!!!!!) and was diagnosed with GS in 1990 as well. The throat thing seems to me to be due to CFS, as it comes on at the same time as other CFS symptoms... I also am constantly "tanned" yellow, have varying sharp to dull liver pains, lack of co-ordination, bouts of severe depression, anxiety attacks (spent one year at home due to panic attacks---- these I KNOW started with fear of vomitting in public due to constant nausea ), also, several bouts of "bile attacks" (not sure what they are: I have these symptoms: a couple of days of more severe liver pains and also constipation, followed by a sudden VERY severe sick feeling....feels like something's surging through my intestines like acid, I assume its bile(?) and then I'll be on the toilet plus vomitting plus passing out, all at the same time!!... After an attack like this, it takes me a couple of days of cold sweats and shaking and bed rest to recover, and my liver is VERY tender... I lose my voice easily... I get mouth ulcers and dry throat too!.. Just came back from a day in hospital. I definitely have hypothyroid. Apparently this accounts for at least some of the digestive symptoms (the passing out on the toilet bit !! ). Another problem I have that I didn't mention there is candida!!

I've been using iodised salt, as well as having kelp in my my diet for a few years now, so I don't think mine is an actual thyroxine problem (in fact, tests have shown enlargement, but not under or over production of hormone, so my actual thyroid is in the clear). It is apparently an enlarged thyroid "tissue" problem, that can be caused by an overactive immune system due to a virus (my doctor thinks residual glandular fever)

pete1959
I have had this symptom in conjunction with acid feeling in the stomach and feeling "bile" in the back of the throat. Was diagnosed with Gilberts but also had liver/alcohol issues. Since cutting out alcohol altogether 12 months ago I have had a vast improvement of all the Gilberts symptoms. Also found doctors dismissive of Gilberts. I had glandular fever when a boy and have never felt brilliant since. Have frequently felt the "nagging infection that won't go away" feeling. Does anyone else get the horrible taste and sort of itchy furriness in the mouth?... As an aside, my sister has similar pains and has recently been diagnosed with gall stones.

sbogle
A thorough medical check-up a few year's ago identified that I'd inherited GS from my father. Like him I have the classic symptoms - get tired easily (need nine hours sleep most nights), prefer low-fat 'dry' foods, can look jaundiced from time to time, don’t feel good after drinking alcohol, occasional poor memory and foggy brain etc. Recently though I've been experiencing some additional problems - abdominal pain seemingly caused by indigestion and now, a swollen thyroid on my right side.

It seems swollen thyroids are usually linked to iodine deficiency which I'm pretty sure is a side effect of GS. Taking iodized salt is the best way to treat it but I wondered if any other readers of this site have linked the two symptoms together and have more information on how to treat a swollen thyroid?

Pinawa
Do you ever feel like your tongue is swollen in your throat? I have problems recently trying to swallow vitamins - they get stuck. In the last year or so I have had a very dry throat. I also get a very itchy throat and ears!... I lose my voice after one night out in a noisy place these days - do you reckon it could be related to the thyroid tissue buildup/swelling? I also had glandular fever... I have dry throat, dry eyes, lips, and low saliva together with recurrent mouth ulcers... I have been doing a Candida diet (theory of yeast overgrowth in the body that can cause many symptoms - similar to those of GS!) which cuts out all sugars that yeast feed on - it seems to have cleared up the mouth ulcers pretty much for now... the pain is real and it worries me, along with worsening fatigue, brain fog, nausea, irritability, continual flus and colds (including losing my voice when I get really run down)

azvessey
I had the lump in throat, and the pain, especially after I drank milk. If I didn't drink milk at all the lump and pain eased. A subsequent CT of my throat proved that I actually had an enlarged thyroid. I went milk/lactose free for the next 4 years and the problem never returned. When I started the SCD diet I found that I could once again tolerate milk products but without the thyroid problem... It may be wise to first rule out Sjogren’s syndrome. Both I and another sibling share the Sjogren’s symptoms but my sister's are far worse than mine. All of my dry 'everything' symptoms, and the mouth ulcers immediately vanished when I started a form of the 'SCD' diet.

New Gilberts Sufferer
I get that lump in the throat thing, and an awful lot of burping as well.

carol1503
I also get a lump in the throat and burping. I also had a strange sensation under my ribs as if they were being pushed up (inside) and my skin around this area (on the outside) felt tingly as if I had been in nettles. Does anyone get a tingly tongue? Mine seems to get really bad if I'm tired and stressed out.

ALS02
A lump in the throat and tingly tongue sensations are apparently two of a range (obviously) of stress symptoms according to a neurologist I visited prior to my eventual GS diagnosis. Currently my GP is investigating whether I also have a hiatus (or haitus?) hernia. Symptoms are chronic chest pain so much so that you think you are heart attack material, back pain under the shoulder blades, really bad indigestion/heartburn, sore throat, pain spreading up through neck/throat area. Again, another stress linked illness.

maddy76
I was diagnosed with GS about 5 years ago... The lump in my throat has been bothering me for a couple of weeks and I also experience pain under my ribs (on my left side) towards the end of the day.

irina
Soon after I was diagnosed with GS, I developed some swallowing problems (food was moving down my throat very slow like getting stuck there), also I have a lot of phlegm in the throat. I had been to ENT (they found nothing in the throat except some redness) and then sent me for barium swallow which was OK but they never decided if I had reflux or my problem with throat and phlegm was due to allergy and post-nasal drip. I was sick and tired of going from one doctor to another so I just stopped going... I am not sure if it is related to GS but before I had it my allergies and phlegm did not feel this bad. Btw, I am 25 y.o

Me:

I have a problem with food getting caught in my throat on the right side. I had a modified barium swallow, where the video clearly shows food passing around a thyroid-shaped object in the vicinity of my thyroid gland. This is likely due to a swollen thyroid, but I havent had it proven yet. My thyroid levels are all normal. But it's very annoying.

weezie
i have just been diagnosed with gs after complaining of being tired and thirsty. obv tests were done for diabetes which then led to gs being diagnosed. does anyone else suffer from extreme constant thirst?

WhosGilbert
I too get amazingly thirsty, but usually at night (can't sleep without a glass of water beside me!) I've been tested for diabetes too, but it's not that. I think it happens more if I haven't been watching what I eat and have had something sugary or fatty.

Pinawa
water goes with me everywhere and I can't sleep without it by my bedside! makes sense it's the liver trying to get help detoxing...

Penguins4ever
I too, am always thirsty. I must keep myself hydrated at all times, and it moves through me VERY rapidly. I have had a bottle of water for years next to my bed

SumariMike
How much water do you drink daily? How many sodas and how much coffee or caffeinated drinks? It's my experience that most Americans are thirsty because they drink very little actual water and drink huge amounts of Coke, coffee, tea -- all of which are diuretics. If you are not drinking upwards of 60+ oz of water and matching what you drink in Coke & coffee with an equal amount of non-caffeinated liquid, you are going to be dehydrated and thirsty. Sugar is a stimulant as well, and actives body processes to eliminate water.

Carol1503
I also have a bottle of water by the bed, some nights I wake with a very dry mouth.

Viva
I have had an unusually high level of thirst for the past few months now… One of the downsides to the 'thirst' issue is that I am now no longer able to know just when I am actually truly thirsty and not.. as I always have the same sensations ("water... water") .. it's annoying

Me:

I have felt unquenchable thirst on a few rare ocassions. I havent figured out if there's a trigger for it. I have some symptoms of hypoglycemia and/or reactive hypoglycemia, but it's more related to eating carbs, which doesnt seem too uncommon in GS.

My maternal grandfather had diabetes but when comparing my symptoms to the list for diabetes, there are very few matches.

The last time this happened I had the following for dinner: wheat crackers, colby cheese, 1/2 cup of cherry coke, banana, Bolthouse Farms Green Goodness

andiuk1975
Normally with GS they say people lose weight but despite increasing exercise and watching what I eat I can't seem to lose a pound (am about 2 stone overweight) and also get the muscles twitches pretty bad. My doctor said my thyroid is slightly underactive.

rBuckner
I was just diagnosed low thyroid (not much) about 3 months ago and started thyroid hormone... I never experienced the nausea or lack of appetite that some do and I definitely am not skinny! I used to have muscle twitches too but with the thyroid they've all but gone away.

bloated
Light pooh coincides when feel tired, pain under right rib AND get VERY sleepy almost immediately after food. Happens about once a month ((I'm male).

WhosGilbert
I too occassionally have light coloured "you-know-what". It is also associated with pain under right ribs, and feeling sick after eating. I've found out this is (often) sluggish gall bladder function, after stress. I've found bitters (like Swedish Bitters) really helpful for this.

TheHans
Also has anyone suffered panic/stress attacks from lack of sleep? I don't actually know if you could call it a panic attack.
What happens is that not always but sometimes when I am overly exhausted - to the point where i cannot sleep I begin to fall asleep and then feel like I am being smothered, and that I am falling. It scares the @#%$ out of me, that is when I think the panic attack takes over.
I also sometime feel extreme pain, when this happens. I really don't know how else to explain it. But it is like whatever this is causes major chemical inbalances in me - because I feel like I am spinning, but also my pupils are the biggest they ever get.
The reason why I do not think it is generally a panic attack is that when I have them, I am usually calm, falling asleep and not worrying about anything.

clogsdon
but 'panic-attacks' as you describe them are very frequently described by those with GS. I have experienced a couple of episodes of late-night 'panic' associated with a dull 'crushing' sensation in my upper abdomen and chest. The first time I was so freaked out that I thought I might be having a heart-attack and went to the emergency room at 3 A.M. My heart, as it turned out, was just fine. For the past week or so, I have been feeling similar late-night sensations - I just refuse to panic now. I notice a very, very strong correlation between these episodes and digestive problems and/or stress.

Mark23
Yes, I've had very similar symptoms to YOU, need a HELL OF A lot of sleep, occasional panic attacks, and those other sleep problems.

mto1
Hi, I know just what you mean. Sometimes I am laying in bed and just on the verge of fallig asleep I feel like I am falling, almost a dizzy sensation. The feeling of being 'smothered' is accurate. Deep breathing has helped, but I also keep something called' Rescue Remedy' by my bedside. it is in the form of drops and can be purchased at a health or herbal store. It releaves anxiety, kind of brings you back to reality. It has helped me somewhat...I also keep lavender lotion by my bed and slather it on before bed. It calms me down.

jaundicedjim
Yes, I think you and I have had the same thing--in terms of "panic attacks". I am usually sitting when I have mine, and I feel relaxed or at least not stressed. Then suddenly I get butterflies in my bowels (kind of like butterflies in your stomach, but it makes me feel like I need to go to the bathroom rather than vomit). Then it leads to that spasm and adrenaline rush.

stnick2008
i've lost a lot of eyesight, need a lot of sleep (got 14.5 hours of sleep the other night), i use a moisturizer everyday because my face gets so dried out overnight, as well as incredible abdominal pains/ panic attacks.

Macara
I was recently diagnosed with Gilberts after having too blood tests done on my liver with readings between 43- 57. Of late i have been feeling breathless and having a heavy feeling similar to that of asthma, but do not have the wheezing of asthma, and can still reach reasonable levels on a peak flow meter. My problem is with getting air in, not out.

SumariMike
I occasionally have this trouble. It's brought on my allergies to foods and eating too much. Try this: take an antihistamine before you eat and see if it helps.

seamusc
I have that problem sometimes, it is due to my haital hernia and reflux... I have a sliding one.. if it is irritated part of my stomach slides into my chest cavity making it difficult to breathe.. if I eat the right foods this doesn't happen.

TheBandit
can anyone tell me if they find it hard to put on weight? i assume it has alot to do with GS and finding it hard to force myself to eat.There are some days when i can stuff myself and have a good meal but this dosent help me to put on much weight. i find my weight can change very frequently, im usualy around 73kg and find some days i can be around 70kg it has been a little less if i have been sick, but i've been told i should be at least 80kg or more for my height.

Ussie
I do have that problem and but if I do gain it is like 8-10 lbs and I can gain or loose it within a week. I think it has to do with fluid retention in my case though. I am 5'7" and average around 125

WhosGilbert
Being underweight (slightly) is apparently quite common with GS, though my weight also fluctuates due to fluid.

Peter0006
I am 6'4" and weigh 150lbs. Yes 150. I stuff myself all the time, but sometimes i cant cause my appatite is gone and i have a headache. One day its 4 hamburgers for lunch or the whole pie even, and sometimes just 2 meals a day. If i do gain weight, and since i go to college, i loose it FAST and even more.

mp8000
73kg - 70kg sometimes 68 (then i feel like *??!*). I am depresed all day

Yoncho
i'm 19, 183cm tall and i weigh 60 kilos....should be about 70 at least for my height...

jaundicedjim
I'm 20, male, 5'8", and I weigh 114. Yes indeed, 114. I can't gain weight at all, not even a pound! And I eat up to 3000 calories a day!

azvessey
My weight has always been a mystery to me. For most of my adult weight my weight hovered around 68 to 74 kilos, 72 being my optimum. Funny thing however is that the only way that I could put on weight was to stop body-heat loss (dress warm) and put on muscle mass (over-achieve).
Then when I developed MECFS (CFIDS, NDS, whatever) my weight plummeted from a very obese (for me!) 74 kilos down to 60 kilos. During this period of very worrying weight loss I had jacked up my diet from an appropriate 2900 cals per day up to 5000 cals per day and my hair started falling out so I dropped back to a very inadequate 1500 cals a day; barely enough to keep an 80 year-old alive let alone someone in their mid-40's.
To cut a long story short I juggled my food around until I found the perfect diet and have come back to 62.8 kilos @1750 cals per day.

BlupperLevi
GS, low weight (bmi of 18-19), unability to put on weight except by bodybuilding.
With hard exercise I pushed up my weight from 65kg to a never before reached 75kg (looked really good...). But that pleasure was a short one. I do not know if it was over-exercising or the grandular fever which I got at the same time, or both, but then my weight dropped to 65 again. After I was tested to have no more grandular fever I still had CFS-like (Chronical Fatigue Syndrome) symptoms. Now my symptoms (tiredness, headache, digestion problems) are declining, 2 years after grandular fever, and I have 68kg.

habadaman
I too have always had trouble gaining weight... I'm now 30 and about 5'10" and have never weighed over 158 in my whole life.

Me:

Very interesting.. and familiar. From when I was 16 till about 28, I was 5'10" and 155 pounds. It barely ever varied at all. I ate what I liked and never gained or lost weight. Now I'm 31 and I'm put on some more weight. It's been creeping up and I'm at about 170 now.

Why? I usually skip breakfast, because I'm clear-headed in the morning and I want that to last as long as I can. Then I have a normal sized lunch and dinner. My wife is a great cook, so I probably eat more than I would otherwise. When I feed myself, it's pretty snack-oriented. Healthy, but small amounts or I go into a sleepy fog where all I'm good for is video games and TV.

waialua81
alcohol is #1. I turn completely yellow and my abdomen feels like there's a demon trying to claw it's way out! The next day I can hardly stand because of the sharp pains in my stomach and my back aches. Dairy also affects me or anything very fatty. I've never been sure if this is because of the GS or IBS or if the IBS is actually because of the GS, You Know? With dairy, I just become very "uncomfortable" and fatty foods make me achy and sluggish.

Laurentdupont44
1. What foods have you noticed affect the way you feel and in what way? fatty food reluctant to eat can't eat it
2. What has been the best remedy you have found to work to lower your symptoms? diet to rice and pasta and water and coke

Mouscelia
Things with MSG and aspartame tend to produce severe fatigue, and migraines with aura and joint pains. Strawberries have the same effect. Foods with vanillin don't set well either.

Things with sugar or lots of carbs cause this and hypoglycemia as well.

Froggigirl
high fat foods give me stomach aches, a constant diet of small amounts of fatty foods tend to result in a toxic feeling and fatigue
2. What has been the best remedy you have found to work to lower your symptoms? basically diet. i don't eat chocolate (big no) and stay away from take-out. if i don't eat properly i get fatigued, and i also take a multivitamin which helps.

Kdhsgf
1. What foods have you noticed affect the way you feel and in what way? Usually fatty foods... but depends... somthing that may not have a high level of fat may contain something that will set me off and get nausea...
2. What has been the best remedy you have found to work to lower your symptoms? Drinking wheatgrass juice...

Ybalci2001
Fatty foods make me SO jaundice and nauseous, but carbs make me feel fatigued.
2. What has been the best remedy you have found to work to lower your symptoms? Dandelion and nettle tea are good for eczema.(Milk thistle makes me nauseaus) Broccoli,black radish,cabbage,cauliflower make me feel good.

Mike260980
1. What foods have you noticed affect the way you feel and in what way? fatty foods shoots through system amd stomach cramps (ouch) can get really bad

Coyote
Not sure if BEFORE GS, but allergic to peanuts, stomach cannot handle white onion.
1. What foods have you noticed affect the way you feel and in what way? -- SUGAR (BRAIN FOG, MOODS), PROCESSED FOODS SUCH AS WHITE FLOUR (NAUSEA, STOMACH, MOODS)
2. What has been the best remedy you have found to work to lower your symptoms? -- MILK THISTLE, AND ECHINEACEA KEEPS MY IMMUNSYSTEM UP

Kate Lerwill
Fruit upset my stomach and caused my mouth/throat/tongue to swell slightly!
1. What foods have you noticed affect the way you feel and in what way? Tea, coffee and alcohol
2. What has been the best remedy you have found to work to lower your symptoms? I began taking Aloe Vera to help the stomach pain which has worked well for that. But I do not know at present whether the pain is caused by the GS or something else. Haven't yet found a help for the fatigue, wish I would hurry up and figure it out.

Gewitterstochter
Before Gilberts were you intolerant to any foods or allergic to anything? (If yes please state) always had food allergies - weird ones. Jasmine, rosemary, basil. Probably liver can't handle them!
1. What foods have you noticed affect the way you feel and in what way?
Because of the asthma and MVP I actually need caffeine. I'd be lost without it. Also, broccoli, onions, garlic, mushrooms, and lots of meat and eggs. I can't go without meat, I literally fail to thrive.
2. What has been the best remedy you have found to work to lower your symptoms?
Still working on this. About to try phenobarb. Currently trying betaine, cysteine + vitamin C (1:3 rato cys:C), taurine, and hi protein diet with lots of oily fish and red meat. Am finding fatigue is less. Hope depression related to it will also be less.

Kimmy Kims
12. Before Gilberts were you intolerant to any foods or allergic to anything? (If yes please state) When I was a kid.. no. Around the suspected time of onset - penicillin, naprosyn, codeine, morphine, dust, pollin, cats, grass, some dogs, carrots, non-whole grain products, sugar substitutes
1. What foods have you noticed affect the way you feel and in what way? non-whole grains, sugars and sugar substitutes - get tired, anxiety and bad depression.. clears up about 24 hours after it hits.
2. What has been the best remedy you have found to work to lower your symptoms? exercise, low-carb/no sugar diet, royal jelly (for energy)

(different page)
Rammy
I'm taking milk thistle and iron tablets which do help and have found dairy and alcohol (which I'm not really allowed anyway!) to be the things to avoid the most for me.

(different page)
Kitty
I find it very hard to digest rich and creamy foods, from creamy curries to a simple mug of coffee with cream instead of milk in it. i have been finding i feel rather nauseous, and get stomach cramps

NJ Matt
Does anyone else have slow digestion problems with GS?
IF I don't take Reglan to digest food in my stomach, I get bloated and very uncomfortable.
I also cut back on the carbs I eat and feel much better.
OF course all the protein is killing my stomach-

rBucknet
I only am low level GS with no jaundice and I'm ALWAYS ready for a nap after lunch. If you haven't had your thyroid levels checked do so. That was a part of my problem and the replacement hormone is helping, I feel more awake in the morning and I ache alot less.

piraterocker
with diet.. you need to eat mostly raw vegan and have certain living supplements.. adding goji berries,maca powder and raw cacao (chocolate) i have seen nice balance within my body and filter and just natural awareness for me.

rbuckner
I found that quitting my daily afternoon Pepsi habit and drinking more water has helped quite a bit. Also I find I can't eat much chocolate in the evening without it causing me a sour stomach or achy stomach.

Froggigirl
i'm recently diagnosed with GS... i've founnd that i have to be really careful about my diet, but the only 'supplement' i'm taking is a vitamin pill. i just steer away from chocolate, creamy deserts, fast food... and eat regulary... and i drink a lot of water.

kdhsgf
I recommend staying on a fat free organic diet that should consist of 80% raw veges... this is the ultimate way to go... as this is what I am currently doing, albeit some foods I cannot get organic... and the 20% should consist of protein... ie: chicken, oily fish... NO red meat (if you can)... Drink 8 glasses of water a day... and do not get filtered water... go for spring water as it's the best... and the best veges for us are: Broccoli, Cauliflower, Brussel Sprouts, Cabbage and Spinach (spinach may cause a considerable amount of gas and if it continues to do so then don't take it)

n1tr0x
1. What foods have you noticed affect the way you feel and in what way? - Fatty foods and alcohol in anything but small quantities make me jaundice and feel sick.
2. What has been the best remedy you have found to work to lower your symptoms? - sleep and eat plenty of food

Me:

Some interesting discoveries – apparently protein is a big help! And the site speaks out against pasta and processed flour because it jerks blood sugar levels around, and I need a more stable blood sugar level for the gimped enzyme to work. There’s a lot in here, and I’m going to comb through it this weekend. But it’s here in case you have the time and desire to read through it.

Here is what I have been eating: Ezekiel 7 sprouted grain tortillas, small amounts of olive oil and coconut oil, Tofu, Blueberries, small amounts of (Almond, flaxseed, and sunflower seeds ground to a powder). Zuccini, Brocolli.. Grapefruit, Granny smith apples, spirulina. Juiced lemon's w/ partial peel, mixed with filtered water. I have been just continually snacking, no big meals. And have been drinking lots of water. And lots of rest (I haven't been working)

After three days of this diet/rest I feel completely different.. all my skin swelling has gone down, I have more energy, I look healthier.. I just sure wish I knew why dairy/animal products/damaged fats.. do me so much harm.. I still don't know if it's gilberts or something else.

deesyweesy2002
an overdose of hit fat food and I can get quite nasueous even on a heap of salmon - mind you in saying that I suspect in the cases it make me ill it posisbly had been panfried in poor quality oil - things like diet coke etc with all the fake sugars are another that make me feel pretty rotten sometimes the day after - I have to remember to be nice to the liver

Carbohydrates

Me:

I'm really interested in this line of inquiry. I've been watching my reactions to different foods lately and am finding that the more carbs I eat, the harder I crash. For example, the worst crash recently was after having cheese ravioli in tomato sauce, white bread and oil, and spinach salad. A terrible crash happens each time I have pasta for lunch. Protein Power Bars crash me hard, but not other brands of protein bars. A veggie sub with wheat bread hits me at about 40% with brain fog and fatigue. The best I felt after lunch in the last few weeks was after I had a bean/onion/pepper/veggie salad without a single carb. I'm glad I saw your post, mouscelia. Reactive hypoglycemia seems like a likely diagnosis. Have you been able to eat carbs at all? Is there something that helps with this? Another interesting thing - I see people reporting that they are often not hungry, or eat little. I've always skipped breakfast and considered the morning my most clear and productive time. Because once I eat, I go foggy. Has anyone else avoided eating for this reason? It appears a lot of GS people have food-related fatigue. I'd like to hear more about that if anyone has anything to say on it (I did read the questionaire post that had questions about this, so no need to repeat that info).

MissCox
Has anyone noticed a correlation between eating shellfish and feeling awful? I was doing well shortly before I was diagnosed, but then one day I ate oysters in red wine sauce from a restaurant in Chinatown. A few hours after I ate them, I felt terrible - fatigued, nauceous, I had the dry heaves, dizzy, spacey, etc. This was the night of my birthday, and I almost didn't make it to my own party, I felt so awful! From that point on, I felt terrible for about a week, and that 's when I went to a new doctor and was diagnosed with GS.

Now, I know people with hepatitis have to stay away from shellfish, so I'm wondering if they tax the liver more, and if they should be avoided.

Jill
I can certainly link my liverish symptoms to eating shellfish - especially prawns and I think it's happened too often to be food poisioning every time :-) Few hours after eating them I'll be sick, get the 'trots', develop a thick yellow tongue and feel dreadful for about a week afterwards.

tomas
I got ill a couple of days after eating shellfish on valentines day. I haven't been the same since. Headaches, weakness, cloudy head, nausea. 6 months down the line, nothings getting any better, perhaps even worse. I've had loads of tests. Firs it was a liver infection, then hemolytic jaundice and then GS.

donell2
I have just registered to respond to a couple of posts. I have a condition called Hemochromatosis or iron overload. This causes me to have a high bilirbin level, this was actually what started them looking into my problem. I am researching the affects of high bilirubin levels and I am finding allot of similar symptoms between GS and Hemochromatosis. The reason I am responding to this post is because I want you to make sure you do not have high iron levels. The sickness you are describing from seafood (especially shell fish) are classic iron overload symptoms and they are very very dangerous if you have Hemochromatosis and eat seafood that has one type of bacteria, very deadly. A good place to research this is :Center for disease control (CDC) and search under "Iron". Some other good places for research are : The Iron Disorders Institute- The American Hemochromatosis Society-The Canadian Hemochromatosis Society. The correct test for this is:serium iron- iron saturation-ferritin. The average hemochromatosis patient goes through 4 years and 3 doc's before being correctly diagnosed, as I did.

min76834
Approximately 10 yrs ago I landed in the hospital after eating shrimp. I was told it was "food poisoning". The Dr did find that I had an elevated bilirubin count, but brushed it off and sent me home. However since then the few times I ate shrimp I had a similar reaction (I have quit eating shellfish). For the last 10 years I have been battling with my health - nothing major, fatigue, muscle and joint pain (been tested for Rheumatoid twice), and stomach problems. Couple of months ago my new Dr ran some blood tests and put me on an anti depressant (Paxil) which has helped. The blood tests which have been repeated showed a high bilirubin count.

bjean
my sister and i both have gilberts and both developed allergies to shellfish shortly before dx of gs.

Pj
While i do eat large numbers of prawns and normal fish, I could never explain the violent sickness that ensued twice last year after eating large amounts of shellfish at a specialist fish restaurant.

ferret119
Food poisoning from shellfish can be fatal to sufferers of cirrhosis of the liver, so it's interesting that Gilbert's sufferers report problems with eating shellfish. I find that cooked muscles are OK, but I can be ill after eating raw oysters.

Sugar Cravings

Me:

I get into sugar phases where I crave sugar for about two weeks at a time, then dont want anything to do with it for a while. I'm in the end of a sugar swing right now. I've been really eating well, and controlling my diet. But I somehow couldnt stop myself from consuming an entire chocolate rabbit last night.

naomi block
if I eat something oily/fried I feel unwell or have stomach problems

dwayling
Apparently the liver has to work hard to process oily, fatty, deep fried foods. It was suggested that I should avoid such foods before GS was diagnosed - they thought I had hepatitis. Check out some health or liver association web sites to get a better idea of what foods are good or bad for the liver.

SumariMike
You may want to check for gallstones. I am in no way qualified to make a diagnosis, but my mom had gallstones and she had a sensitivity to rich, oily, fatty foods at that time. Her gallstone pains showed up when she ate such foods. She also had a terrible time sleeping because her back hurt.

Ginger
I just had my gall bladder removed 2 weeks ago and I feel great! I used to blame alot of my pain, indigestion and nausea on GS and IBS, but after 2 years of insisting that was not my main problem I was diagnosed with a minimal functionning gall bladder. I don't fit the bill of the 4 F's: FAT, FEMALE, FORTY or FAIR, and nothing ever showed up on ultrasounds. So my doctors went 1 step further and performed a HIDA scan. Sure enough my gall bladder was performing below a 9% level (it should work above a 35% level). Anyhow, you might want to look into this area. The only side affect I had after surgery was that I was slightly yellow for a few days and extremely fatigued.

waialua81
My doctor had me have my gall bladder removed; he thought that was causing my jaundice and malaise (and I had some small gallstones) but it didn't help. If anything it made it worse as now there are very few things I can eat without being "sick"!

antnee
I know for a fact that beer can affect me, I'm mainly a bitter and whiskey drinker, and boy do I suffer. It's not that I get drunk any easier than my friends, but when I do get drunk, I seem more likely to get hang overs, and they're usually BAD!

Sam Greason
I am 43 years old and recently developed an alcohol sensitivity. One drink and I get a bad headache that lasts 24 hours.

Williecanuck
My symptoms include alcohol sensitivity. 2 beers and I'm half baked. Sometimes I can barely handle 1. I used to be able to drink alt more. I find Milk Thistle helps before and after. It seems to cut down the nausea the next morning… If I have 4-5 glasses of red wine over 4 hours, I turn yellowish green. My Biliverdun count jumps along with the Bilirubin. Tired and extremely sick at this point.

LucyUK
I can only manage 1-2 glasses of wine now. I used to be able to drink alot more. The thing is I forget how it affects me I can be enjoying a lovely bottle of wine with friend over a meal no problem - then all of a sudden I feel really ill.

Azvessey
This might just apply to me but I can drink any quantity of dry alcohol with or after a meal of low-carb protein and low-carb veg. If I try to combine sugars or high glycemic foods with the alcohol, I get bloated, nauseous, very drunk, and turn yellow.

Me:

I have GS. My experience with drinking has been variable. Up until the past few years (I'm 31 now), I've been able to drink all I want and have no hangover. But that slowly changed a few years ago, and I started getting hangovers, and now I'm seriously ruined the day after even drinking 2 beers. I feel terrible the whole day.

And yet, a couple days ago I had 2 beers at an Earth Day festival and felt just fine, with no hangover the next day. Why? It's possible the liver-cleansing supplements and change of diet of the past month have been having a positive affect and my liver was able to deal with it like any normal person.

Some patients report experiencing unpleasant physical symptoms during episodes of high bilirubin levels. These may include persistent or meal-related fatigue, dizziness, tremors, nausea, abdominal pain, and "brain fog", with or without jaundice. There is some evidence that Gilbert's syndrome also reduces the liver's ability to detoxify certain chemicals; it may be wise to avoid drugs that tax liver function, such as paracetamol.

Anxiety, stress and depression – a complex area. Anecdotally people have suffered socio-phobia and anxiety attacks after experiencing GS symptoms. The reverse is also true, and psychological stress and unhappiness can have a physical response in stressing the liver function and cause GS symptoms.

Symptoms of poor detoxification are jaundice, loss of appetite, malaise, and fatigue: common symptoms of individuals who write into a Gilbert’s Syndrome support website: www.gilbertsweb.ndirect.co.uk. Gilbert’s Syndrome can also cause cholestatis, or reduced bile flow, which results in fatigue, malaise, digestive disturbances, allergies, and chemical sensitivities, PMS, and constipation. {Murray, 371}.